This is Dr. Koby explaining why EDS patients imaging is being read as normal when there are major problems being missed! He is an amazing neuro radiologist! Helping save many EDS patients lives!
An X-ray that produces thousands of X-ray images of the spine in motion which shows how the vertebrae are moving, unlike static X-rays that may miss problems as you are being still and usually not moving in the ways that produce your pain or symptoms. The DMX is essential to catching these instabilities and really should be available all over the world.
This was my DMX that was done December 2016 when my instabilities were first diagnosed and I had validation for all that I had been feeling over the years. You can see the Atlantoaxial instability (C1-2 injury)
I also wanted to add on a link of an amazing physician who has devoted his whole clinic to Ehlers Danlos Syndrome (EDS) patients. Dr. Spanos is truly devoted to helping EDS patients. A few of my friends live close to him and are patients of his. Lots of info on his site you can print off and take some information to your Doctor.
This is a list of EDS knowledgeable neurosurgeons. This list contains surgeons that have performed surgeries on people that I know and have had good outcomes. In my personal opinion Dr. Fraser Henderson & his colleague Dr. Rosenbaum are the very best!
Here is the list and there are also 2 paediatric surgeons on here too for kids that are suffering these neck issues as well.
These are some rigid cervical collars I would suggest if your neck is unstable. I found it very difficult to get a hold of one here in Canada but had I known more about the braces I would have just ordered it on line. These braces are adjustable and that is the key to make sure that they will fit you. The Eclipse has a easy pinch adjusted at the front and can adjust the most to 15 different heights, the most adjustment that can be done of all the braces. The Eclipse also has thicker padding than the other 2 braces. The Aspen vista is slightly more rigid but has a easy adjustable knob that you can turn up or down. The Miami J adjustable brace is not as easily adjustable as you have to have it off to adjust it but the padding is a lot more comfortable than the vista.
You can find them on line thru amazon or eBay or you can find a local medical fitting clinic such as a orthotist. You cannot find these braces in a pharmacy. If you make sure the braces are adjustable you don’t need anyone to fit it for you, however if your brace is not adjustable then getting a proper fit with a specialist will be needed. This is why these 2 are the best because you can adjust them yourself.
Eclipse Cervical Brace: This brace is my most favorite, it holds the skull the best of you have CCI. I can wear this brace and not have to lift my head off my neck. Highly recommend it.
I’m sorry it’s been quite awhile since I last updated my blog. I like to be able to share happy, uplifting posts but the truth is living with chronic illnesses there are ups and downs and all those in between and I have always been honest and really like to be truthful with my experiences as I know there are others out there struggling and maybe this will make you feel less alone. I share my journey not for sympathy or for people to feel sad but to show the truth of what living with EDS in Canada is truly like. For each day you live and don’t have health challenges that hold you back from life those days are worth more than anything in this world. Those are the best days of your life.
Everyday I put a smile on my face remembering I am lucky to be alive for another day. I am grateful for the early morning sunrises and all the summer flowers in bloom. I am grateful for my girl Roxette (my doggy) and for my parents and family members and friends but honestly lately I have been feeling a lot of why’s. I have always been the type of person that does it all and could never sit down always going and going, doing this and that and everything in between. These last 5 years my life it has been a 360 degrees turn.
The truth is just because you eat healthy, exercise and do all the right things to take care of yourself doesn’t guarantee that you will never get sick or have a chronic illness. I don’t think anyone truly understands this until you become chronically ill. I lived a holistic healthy lifestyle took care of my body only ate organic foods, avoided medicines stuck to just holistic ways. I exercised practiced yoga, meditation, I went to wellness centres and did preventative care. If I did all of these things then WHY am I the way that I am now? I took the time to take care of my body and I was good to myself. I did all the things that I could think of to care for my body and provide the best environment for me to be healthy.
I wish I had the answers to my question but as I have been learning life is a series of lessons & learning and good & bad things that happen. I can’t help but think back to all the things I did to take care of myself. I was a Registered Massage Therapist I knew how to take care of the body. Healthy people that haven’t been chronically ill will always offer their opinion, do that eat this, do more exercises be more positive and think better thoughts. No one can truly understand what a person feels until they feel it themselves. I think the people that would make the best doctors are the ones that have been thru it themselves, they can relate to it and as humans we don’t understand things unless we can relate to them. what most people fail to recognize is that most chronically ill persons are probably the most positive people in the world as they are the ones feeling awful everyday but still try to lead as normal lives as possible.
I feel so misunderstood by the majority of the medical community where I live. Imagine needing glasses because you had bad eyes but the people that were in charge said just focus more and you’ll be able to see better, the person tries with all their might to see better but just cannot see no matter how hard they try, without the glasses. The person reports that they need the glasses but are denied the glasses because they aren’t trying hard enough so they walk around unable to see and keep being told that they are simply not trying hard enough and are just de-conditioned. This is a battle many people with chronic illnesses face, there is so much misunderstanding as many of these conditions do not have a cure the best bet is managing the symptoms on a day to day basis. The person knows what their body needs and yet the professional can’t understand this because it didn’t say that in the outdated, misinformed documents, books, etc or in my case its not in a article or suggested by a Canadian doctor.
It seems so crazy how there is such differences between Canada and the USA and even in Canada between provinces. I saw a electrophysiologist in Alberta and because he is in Alberta my GP’s office said I don’t have a opinion from a BC doctor. BC does not have a autonomic clinic set up to properly do the testing. BC medical pays for patients to travel to get the testing done in other provinces but then diagnoses are then questioned if they are not made in the patients province. My head is just spinning I can’t understand why people wouldn’t work together to get a person the proper care that they need regardless of what area of soil there feet are planted on. One specialist told us that “the USA over operates”, so we posed the question does that mean Canada under operates and under his breath he said “maybe”. Don’t the majority of the published medical journals come from the USA? I can’t understand why there is such a discrepancy when most of the EDS knowledgable physicians are in the USA why wouldn’t the physicians in Canada be open and want to get the opinions of the specialists that do have the knowledge or experience?
With my Dysautonomia (hyper pots) my electrophysiologist in Alberta told me I must consume a minimum of 3L of water a day and 3 tsp of salt per day. It was even written in my notes passed on to the referring doctors. You know what I was told by one of my GP’s is that salt is a placebo and if I told any other doctor that salt and saline infusions help me they would laugh at me. He also told me that I need to stop seeking help outside of Canada. He told me this is what I have to work with and I need to accept it. I was also told at that same appointment “no local neurosurgeon wants to touch me with a 10 foot pole”… I couldn’t even form words together, it took everything in me not to burst into tears. Nothing like feeling humiliated and invalidated with something that is actually working for you and your body the fluids and salt. Sure it’s not the typical “normal” healthy person thing to do but for a person that is suffering with a chronic condition they know what works, trust me anything you can do that helps keep your body at a stable place it’s everything to that person. A moment of having symptoms under control is very much welcomed with open arms.
Why is it that the chronically ill are at the mercy of persons that won’t or can’t help them and when they come with ideas or strategies that are working for them they are shot down. It’s a real tragedy that happens to many many people. I have been trying to see a neurosurgeon since 2014 and I have been denied with every referral made. Every new specialist that I see tells me I need to see a neurosurgeon but they won’t refer me themselves and leave the referring to my GP who has literally zero clue at how to refer me for my conditions. I am asked what do you want me to write? Ummm I’m the patient isn’t that your job to write the referrals? Or am I suppose to write them and then have them send them in? (SMH)
I contacted my MLA who then contacted the Health minister and they called me and I explained my situation and how I can’t get in to see a neurosurgeon or get a out of country medical form signed so I can go back to Maryland to get help from my neurosurgeon that knows me and they said sorry all we can do is give you a list of all the BC neurosurgeons and you and your GP can go thru the list and write formal referrals to all of them……. I said ok but what happens when I get written denials from all of them they said well you could contact the college of physicians and surgeons and file a complaint…. I said that is there to protect the doctors who is there to protect the patients and get the patients the medical care that they need… again they said sorry we can send you the list of the surgeons or you’ll have to make a complaint with the board. My parents did write them and asked them if they did C1-2 fusions in BC and they replied and said that this surgery is available in Canada but is reserved for “trauma” patients only. Well I did have a trauma to my neck that’s what started this whole thing…..
Again I explained I need someone to sign the out of country medical form but I can’t get in with a surgeon here again they said sorry you need a neurosurgeon in BC to sign it I said I can’t get in with one I have been denied by over 10 of them…… this is what happens it’s a never ending circle. What am I suppose to do? I have all of my documentation, I have folders and folders of notes and published peer reviewed medical journal articles explaining what I am going thru and what I need. It’s all political and you can bet if one of those persons or family members were suffering they would be getting the help they need. I’m left with no answers and no help just a list of 80 something neurosurgeons that are practicing in BC. The only thing I can think of doing is to send a personal letter to each of them begging for them to see me to at least fill out the form or offer me some help here. My neurosurgeon in Maryland would be happy to come here and teach them he has offered this many times but no one has shown any interest. He has offered to speak to them in what I need and it’s denied as well.
Sometime in March or April I came to the realization and threw my hands up in the air and decided that I cannot fight for help here anymore. I am thoroughly worn out and I just cannot handle this battle anymore. If things are meant to be they will happen but I just can’t use my energy to fight for care anymore. The toll that it has taken on me and my family is awful. I can’t continue going to appointments just to keep getting told there is nothing that can be done for me or what I say works for me is completely disregarded. Logically a person just has to give up and stop trying. Since January I manage my own PICC line I buy my own saline fluids, my own dressings, and somehow manage to reuse IV lines more times than I should to get me thru keeping my body hydrated which keeps me out of the ER which is the most dangerous place for a person with chronic health conditions that are not commonly known about.
My joints have been more unstable and every time I swallow I can feel my throat dislocate, which is a really awful feeling. When I do manage to eat or drink I have to pay such close attention to swallowing and if I forget I choke very easily. I even choke on my own saliva if I swallow and don’t pay attention, it truly pathetic. My Tethered spinal cord has been really bothering me. Somehow I keep convincing myself that it will get better tomorrow but there have been hundreds of tomorrows and it’s just not getting better. With this tethered spinal cord it can cause neurogenic bladder & bowel and I think both are affecting me. I literally cannot feel anything in my abdomen and I think my GI system has shut down, like the nerves are not working for motility. I don’t feel hunger like I used to when I had not eaten. I have absolutely zero energy and even chewing food I have to use my hands to help my jaw chew because I am too exhausted. I don’t understand this because this has never happened to me before. Eating or drinking is a energy zapper for me. I am going to be undergoing some testing as my doctors think I have Gastroparesis which is basically where your stomach and intestines stop working. If I eat something small I feel sick and I am full for hours and hours even a cup of liquid leaves me stuffed for hours and hours. I’ve lost 50 pounds in a few months as I have not been able to eat or drink as usual.
My neck at C0-1 has been dislocating it is the worst feeling because it will make a loud thunk and crack & go back into place and I will feel stunned for a few minutes, I can’t speak or move then things settle and I feel ok until I move my neck and it slips out again which happens dozens of times throughout the day. The scary thing is that I know what’s going on with the joint in my neck and I can’t help but think it’s only a matter of time and I could literally just internally decapitate. My first thoughts are would anyone even be able to help me would they even realize that it’s my neck? Or would I just lay there dying while the medical persons all ran around stunned and confused as to what was wrong with me…..
I wish people knew how much I push myself to just lay in a reclining chair. To just get dressed in the day is so energy zapping it sounds ridiculous and before 5 years ago I never understood how much energy it takes to just get dressed for the day. To just act “normal” like I am fine and not showing any symptoms. I try to act this way on most days but then my body just can’t keep up and I crash.
No one would choose to be chronically ill and I would do anything in the world to go back to my old life or trade with anyone. I miss working, I miss interacting with people, I miss being able to just get up and get in a car and drive. I miss my friends that I used to always see. I miss being able to eat and hydrate without having consequences.
The helpless feelings of not being able to drive, not being able to cook or bake a meal like I used to. Nothing is the same. I have had no choice but to accept this and I have accepted it but somedays I really do dream about the life I had. I haven’t spoken about this but I am open about it now because that’s the only way a person can heal is by being open and honest. I used to be married, I was with my then husband for 12 years. I thought I had a husband that would be there for me in sickness and in health but instead I was abandoned like I was some dreaded parasite, like a piece of garbage that was tossed away and replaced without any regard. You really don’t know a person no matter how long you have known them until you get sick then that is when the true colors come out and you see if they were the person they claimed to have always been or you find yourself all alone. I smile and tell people I am fine but honestly I am hurt, and confused as I was never able to get a truthful answer or explanation I was gaslighted till the end. I am alone and the truth is I will always be alone. I have to be fine with that, I can barely take care of myself thru the day I couldn’t even imagine having a relationship with another person. I don’t have enough energy for myself let alone another person, and in all honesty I would find it very hard to trust another person so why would I even want to set myself up? been there done that is what I feel now. This spring I did one thing for myself that made me feel stronger I reverted back to my maiden surname and it felt great to take a piece of my old self back.
Chronic illness is a unwanted thief, bursting into your life and stealing every bit of the life as you once had known. The only thing a person with a chronic illness can do is accept the thief for what it is and pick themselves up and somehow dust themselves off and find a new way to live life. Live life in the new way with all the memories that once were and have always been, but live life alone almost like a child alone learning how to live from scratch with all the memories of what once was and had always been buzzing around your head. I often lay here thinking this must be what it feels like for people that get abandoned in nursing homes. They become a burden to their family members, the people that they once cared for and are just dropped off with a few items that are familiar to them. They are visited on special holidays or celebrations but forgotten about during the rest of the times. Tears flood my eyes as I type this my heart breaks as I think of how our society is there for people when they are able bodied and can make contributions to the community but as soon as a person is unable to they are dropped and forgotten about. 😦
For a person with a chronic illness people care and want to help at the beginning stage but then as time marches on people get tired of seeing a person staying sick, they can’t understand how a person isn’t getting any better already. The person doesn’t get better, which logically we are programmed & conditioned to believe as most illnesses have a beginning a middle and a end. For chronic illness it gets awkward and people are forgotten about or cut out. Chronic illness folks don’t have a end in site, this is something that we are told we will just have to learn to live with for the rest of our lives, there is no cure, there is also not a end in sight this will go on for the rest of the days that we are alive.
I have given up but not in the way it sounds. I’ve given up seeking help for my medical problems whatever is meant to be will happen and I am learning to trust in this and I have stopped trying to explain my situation to others. People will only understand what they can at the time. What conclusions they come to in their own mind about me or anyone is not my business and none of us have to prove our illnesses to others. I can go blue in the face trying to convince medical professionals, family members, friends etc about what its like and what I need but the truth is unless they have been thru it they just can’t understand. All I can do is get thru each day as best I can and just ignore all the judgements and misunderstandings people have as someone will always have a opinion on what they think you should be doing. When people ask how I am it’s always going to be I’m fine because I have no more energy left to explain that no I am not fine I am struggling and I have a chronic illness for life Like it will be here for the rest of my life there may be better days but the truth is a lot of days I am struggling in silence praying for a miracle of help to come along or for the suffering to end because I am not living I am only surviving dreaming of the days I could live again.
I have accepted that I cannot get the proper medical care here in BC, Canada for the neurological issues that I am facing. Its taken me 5 years to accept this. Its taken me 5 years to realize that it is not my job to educate and make doctors believe me. It is not my job to go to appointments and leave crying because I can’t get help or not being believed. Its just not my job to take on any of this burden, I do not have any more strength to give to this burden. I have carried this burden for over 5 years and I just cannot do it anymore. All I can do is keep holding on and pray that one neurosurgeon will see the light and stand up for me and fight for the care that I need.
As my health continues to decline it is what it is there is literally nothing I can do about it except accept it, or literally win the lottery to get back to the USA where the specialists are. I have fought for over 5 years, I’ve fought for help here. I just don’t have anything left in me to give to keep seeking help here, I feel completely empty and completely let down by the BC medical system. My candle has been burned at both ends and there is just nothing left but ashes. I am so tired everything exhausts me these days. I feel grateful to have my blog and to all my followers and my fellow EDS warriors. I hope that information on this blog helps you in some way. I have & always will be a advocate for the chronic illness community. We have Strength in numbers and alone we may be fragile but in #’s we are strong. 💪🏻
In a dusty corner of my heart I still hold out a shred of hope that a miracle will happen that will get me back to Maryland to see my neurosurgeon. some days the hope is stronger than others.
Thank you for stopping by my blog, I am wishing each of you a summer full of peace and sunshine and many happy moments. 💜☀️ 😎 ✌️ 💜
***I have received several messages from people trying to find me on FB to send me a message you can find my page on FB:
I thought I would share a post on how to create a medical binder. This binder will keep you safe if you are unable to speak or you have to go into hospital. Sometimes during stressful times such as going to hospital you cannot remember all of your information, allergies, medications, medical conditions etc so this binder will be a life saver not only to you but for the medical professionals that take care of you as well.
I made this binder after my scary incident when they thought I was having a aortic dissection I was not able to speak after a adverse reaction to a medication I received and I was not able to tell them about my neck and when they have to intubate they have be so very careful with my neck and I require fiberoptic intubation. My friend suggested a medical binder and I googled and googled and had to pull info from many places to get my binder all together. So hopefully this will help you and is simple for you to follow & complete.
I have a page in my binder with some fun, truthful sayings I know the nurses enjoyed looking at these. Also I must say some of them are very truthful and can also serve as a reminder about all the misconceptions there are out there. Like for example EDS is just being double jointed and doesn’t cause problems. We now know that EDS is a multi systemic degenerative condition and it is bringing awareness to how serious this condition really can be, and how hard individuals fight for there health.
All the Dr’s and nurses appreciated my binder, as it saves my brain fogged brain trying to explain all this and they can either take a copy of this or I always have extra copies so they can take the papers out and take them if they needed.
What you will need to make your medical binder:
Binder, with a clear pocket on the front so you can place your cover sheet. (Between 1-3″ depending on how much info you must include).
Divider tabs
Clear tabs that have a pocket to hold papers, I put extra copies in these and write extra copies so they know they can take a sheet.
3 hole punch
Paper/printer
Copies of your medical records/ documents
The medical binder is structured like this:
1: Cover sheet as in the example. Tuck this into the front clear cover on the binder. It’s great to have your picture and the information and I also included pictures of my neck because sometimes when people can visually see what it is actually like they tend to be more gentle and have more awareness of how gentle they must be.
(Example)
2: Medical Information such as your name, DOB, blood type if known, emergency contacts, allergies, medications you currently take, dr’s name and contact info, as well as your pharmacist and contact info for them.
(Example, don’t mind the black marker just had to black out my information)
3: The next page I have in my binder is the surgical/ anaesthetic precautions for EDS patients. This is critical to have and to have several copies so your surgeon, Anaesthetist, you can pin a copy to your gown so that everyone is aware of your special requirements during a surgery, when you will not be able to speak for yourself. Print 5-10 copies so you always have extra of these, probably the most important page in your binder. Here is the link from Dr. Spanos:
4: Past medical history: you can point form write out past medical history from most recent to older history. This will also save you from explaining all of this and is easier for the medical staff to read off your sheet.
(Example)
5: In another part I included all my most recent pertinent doctor letters and referrals and reports like my post operative dictated report, imaging reports etc all communications that could be needed. Place these in most recent to older order. And be sure to make copies of these in case these get misplaced then you have hard copies of your own in a safe place. Remember your medical files are yours, you legally have a right to access them. Your dr may charge you a fee for copies but it is your right to ask for copies of everything and I mean everything anytime I have a appointment I get copies of everything. You wouldn’t believe how many errors are in your notes, mistakes happen and if you know this it will save you in the long run. I know it may seem over the top to some but when you have complex health issues you need to have your own copies so that you can read thru and understand and see if any errors have been made.
6: If you have uncommon or rarely discussed medical conditions I also have printed off for example for EDS from this it has all the non professional papers from the EDS society, about all the organ systems in the body that can be affected. The articles explain what can happen with each of them. Don’t worry that it says non professional as my dr said she is not a professional in EDS no one really is because we are all life long students in learning about EDS. This is the link where you can access these articles and print them off.
I also would suggest having extra paper in your binder in case you need to write anything down and having a pen tucked inside as well. Being prepared will also help give you will have more confidence the next time your in need of help.
Remember you are in charge of your care and taking care of yourself. Doctors are human and cannot possibly remember everything and have very high patient load volumes, this is why it is important for you to keep copies of everything and create a medical binder.
If you cannot make one yourself ask a friend or family member to help, or feel free to ask me I’d be happy to help you create your documents. There is so much less stress having to make a hospital trip having this all organized and not having to worry that you forgot to mention a important piece of information.
It’s so important to have this, especially if you have complex health issues or have serious allergies or take medications. I will never go to a hospital without my binder, things happen and not every medical professional will know or understand your condition(s). Providing the best resources you have will help everyone all around and save you frustrations and time. Plus when you need documented proof of your condition you have it on hand so no one can doubt you. All my nurses were extremely happy to see my binder and read thru it, as well as especially the ER dr’s we’re happy to see this binder. I mention EDS and you can see bewilderment in there eyes and when they see the binder it’s a huge relief to them, they will appreciate it, and take you more seriously.
I hope you find this blog post helpful! Please feel free to contact me if you’d like some help in creating your medical binder, it makes my heart happy to know that you will stay safe and not have to endure the frustrations or anxieties that these unexpected or expected visits can bring.
Happy New Year wishing all of you much health & happiness as we enter into this 2019th year. 😊💜
I am not much of a video person but the other day I had such a let down I was seriously feeling so let down, frustrated and just so confused I decided to do a video. I think video probably conveys the pain, frustration and hurt that I am feeling better than I could explain it. I was trying my hardest not to cry because I wanted to get out what I was feeling so there are 2 videos because I needed to compose myself and honestly I don’t know how to edit videos or even merge them together so this is the best I could do.
I saw this saying the other day and it’s just so true. Until a person has faced a situation themselves they cannot really know how hard a person is trying and truly pushing themselves.
I will also add that it’s very clear that Canada especially the west coast of Canada does not help EDS patients with neurosurgical or even with basic medical care. I had hopes that perhaps I could be provided some basic care and quality of life needs… this has proven to not be available.
A quick run down I cannot walk properly I haven’t been able to walk properly without any assistance for 2 years now. Things became worse on October 11th when I woke up numb from the waist down. My right leg stopped working and it drags behind me. I am very unsteady on my feet and I am very weak and have a lot of fatigue and adding my POTS into it I am short of breath and cannot stand or walk very far at all, even with my rollator. Most of the time my vision goes black and I have to suddenly sit down before I pass out. It was suggested that I have a Occupational Therapist come for an assessment, I was somewhat hesitant at first because I don’t like a lot of medical persons in my home because it is my safe place away from all judgements and ridicule of how the uneducated medical person thinks I should be living my life. They don’t understand about EDS or POTS and place their personal opinions onto me about how they think I should be living my life. I did however agree because I am grasping at straws for any help that I can get here. I am being open to everything suggested to me, I really truly just want some quality of life at least somehow being able to get outside and take my dog for a “walk” and just be in nature. I’ll leave the rest for the videos.
It’s just exhausting trying to access basic medical care. I know they are not providing the neurosurgical care that I and so many Canadians require, but now I am being blocked from basic quality of life. Even my own family doctor has zero idea what I face, a office visit does not portray how much I am struggling, I can’t even get to my doctors office anymore so I am at the mercy of asking for phone appointments when they can be fit in. I am having to prove myself and I know they don’t understand me or my conditions and they transfer their personal opinions onto my home care team and it creates further blocks in my care. When a patient comes to you sick the last thing they should have to do is convince you they are not well. Yes a EDS patient does not fit into your typical cookie cutter box, some people just don’t fit into these typical boxes that they seem to squish everyone into. I wish this was just a nightmare that I could wake up from. We Canadians with EDS and other less common conditions deserve basic care. Every single human deserves access to basic proper health care. This is a human rights issue.
Do I and others born with genetic conditions not deserve essential medical care? Why is this even happening in Canada? Other countries look to Canada as such an amazing place to live with access to the best universal health care, the problem is this care is provided only for people who fit into the cookie cutter boxes. If your truly a medical zebra the walls are put up and they don’t know what to do for you, except wash their hands of you. We are left fighting on our own, having to do all the research and tell them the type of care that we need. Honestly we become our own doctors without the certificates. This is not a job I should have to do nor want to do but it’s necessary to keep us safe from all the neglect and dangerous interventions that are offered to us… Not dangerous to the average “normal healthy person” but for a EDS patient a spinal injection could have devastating consequences.
I lived thru this in 2014 I suffered a spinal fluid leak. I was sent home from the hospital with this leak and told to get some rest and I just had a complex migraine (I actually had undiagnosed severe C1-2 atlantoaxial instability) which is why I was there my neck was so bad it looked like I was having a stroke or they thought maybe it was MS….the leak was caused from a botched attempt at a lumbar puncture that was done to rule out the cause of the neurological brain stem signs I was presenting with. Had I known I had EDS then I would have avoided that nightmare. I had to fight to get this leak repaired it took 2 blood patches, the first failed and I had to fight so hard to get them to do a second patch. During the second patch I passed out because the pressure in my head was too much and all of a sudden everything went black and I woke up to people screaming my name the nurse said that’s never happened before, she had a scared look on her face… looking back I am sure my undiagnosed EDS played a huge role in this. Had I known this I would have never agreed to this lumbar puncture which can cause so much harm to EDS patients because of the fragile, weak tissues.
On March 1, 2018 when they misdiagnosed me as having a aortic dissection they acted fast and quick and for the first time, as scary as it was I knew that I would be able to get the care that was needed, for once I fit into the cookie cutter box. Thank goodness it turned out to not be that but it got me wondering how many times has this happened…. I am sure a lot of money was spent on the inter hospital emergency transfer and they also had a ICU nurse accompany me along with the paramedics. The cardiothoracic surgeon was even waiting for me as I pulled into the hospital bay. Thank goodness this man had the sense to re do the CT scan, can you even imagine if they had cracked my chest open for nothing, that’s just terrifying, I will never forget that terrifying day. I was terrified about having anaesthesia because of my neck and the doctors not understanding EDS and my fused neck and I was so worried that they would break my hardware and mess up my fusion that I had to sell my house and use my parents retirement savings to fund. I have nightmares about this still. Without asking me they gave me some medication to relax me, they assured me they give it to pregnant women all the time and it was “safe” and of course I had a adverse reaction to it. I literally couldn’t move or even speak. Thank goodness this nurse was there she grabbed my hand and held onto it the whole ride down to Victoria. I had no way to communicate how I was feeling and my throat felt like it was so tight, they were asking me questions and I couldn’t even speak I just stared at them tears pouring out of my eyes hoping they would realize something wasn’t right. I had my phone in my hand and I couldn’t even type I wanted to call my mom and tell her something wasn’t right and she would be able to tell them.
After my 2nd CT scan you know what they told me that the CT scan machine at the first hospital was out of date and old so it incorrectly showed this aortic dissection…. so if it’s old and out of date could that also mean that it is missing stuff as well? How are they even allowed to still be using this old out of date machine? It’s December now and that was in March and they’re still using that scanner in the hospital, I inquired about it at my most recent hospitalization. It makes me wonder how many more times this has happened how much wasted money has been spent on this sort of diagnostic errors? Is this why the out of country funding is not being approved because of all these errors in wasted money there is no money left for us to get the essential neurosurgical care we require that can bring us EDS patients some quality of life?
It was after this terrifying ordeal my dear friend suggested a medical binder with all my info in it so if I ever found myself in a situation like this again the papers can speak for me. My next blog post I will show you how to make a medical binder. I recommend it for everyone that has any condition it’s helpful to keep you safe but also helpful for the medical staff as well. I had my binder at my most recent hospital stay and all the nurses appreciated it. Especially having an uncommon condition it’s a life saver. EDS is complex and that’s another reason we require these specialists that know EDS we do not respond the same ways in which a normal person does to any interventions. A EDS body metabolizes medications very differently. For example during anaesthesia EDS patients require larger amounts of medications to put us to sleep and to keep us asleep we metabolize these types of meds very quickly and can wake up during surgeries etc. On the other side of that there are some medications that EDS bodies cannot metabolize such as that relaxer med they gave me during my false aortic dissection. It took me 4 days to metabolize that medication. At the hospital I felt like I needed to bolt out of the door but I couldn’t walk I was trapped. I was in the resuscitation bay and I pulled off all the heart monitors because the only thing I could do was stand up with my moms help. This medication gave me such anxiety I never normally feel this need to bolt. I came home and it took 4 days for me to metabolize that medication. For 4 days I had the worst anxiety in my life. Finally after the 4th day once it was out of my system I was back to my normal me. Drug induced adverse reactions are horrible especially medications given thru IV just way to intense for my body to handle. I have that listed on my adverse reactions now but it’s these little things that make it crucial that we only be treated by knowledgeable EDS doctors. This is what happens when I take medications it’s very scary to try new ones because more than likely it will be a adverse reaction. My neurosurgeon Dr. Fraser Henderson completely understands all of these things and so does the hospital staff at his hospital. A EDS patient can go there and feel relaxed knowing that they are safe in regards to EDS and all the complications that EDS patients could face.
This is a page from Dr. Spanos this is a page that every EDS patient should always have with them. Go to his page print it off and put a copy in your purse or fold it up in your wallet.
For those wondering why the zebra?? Except that EDS is not rare it is under-diagnosed and take years to decades to be diagnosed and some even have to go out of country to get diagnosed properly.
Thank you for reading and sharing my blog around. I appreciate every single person who takes the time to go thru this. I also really hope that others out there see this and helps them not feel so alone. All of the zebras out there your voices matter and they count and together we are a dazzle and that makes us even stronger! Feel free to message me anytime with questions the more information and knowledge we can get out the more likely we will be into getting basic care and neurosurgical care here in Canada or at least getting the funding for us for these life saving essential surgeries.
They do so many elective non urgent surgeries in this country yet life saving neurosurgeries are being denied… this is a problem and we won’t be swept under the rug we need help, we need care, we need the funding to go to the USA if it won’t be provide at home here for us. This is a basic human right. Just because we have EDS which we are born with and did not cause were denied access to essential medical care? If you will not help Canadians with these essential surgeries here or approve out of country funding is this not violating our human rights for access to medical care?
Side note:
Another article explaining why Canada needs to get a upright MRI machine for proper imaging. Are you being told that your static supine imaging is “normal” trust your body you know it best. Upright MRI is available in the USA or in England and some other places thru Europe. Canada does have a upright MRI in Vancouver but it’s only allowed use is for research, this is such a shame. Many EDS patients in Canada could have answers if they were allowed to have a scan done in the MRI here. This would show the neurosurgeons here our unstable spines due to ligament laxity, as when we are lying down the spine seems stabilized and therefore looks “normal” but this is furthest from the actual truth.
I really debated posting this Video I filmed on September 19, 2018. I wasn’t sure I should post it but you know what I am just being 100% honest and real of a typical day in a life of needing my spine stabilized. I was having another usual regular day and I decided I needed to video this because if anything happens to me I need people to know that this is caused by my loose skull (Craniocervical Instability) skull-C1. If something happens to me people need to be aware that this could have been corrected. I can’t even begin to explain how it feels but it feels like my body is shutting down and it takes every effort to just breathe and keep my eyes open and focused. This is happening to so many people all over that are suffering with Craniocervical Instability. I know if you haven’t experienced this you can’t relate to this feeling that is happening so sometimes getting a glimpse is the best way to see what it’s like to be stuck like this.
(You need to have your ringer turned on if you watch this on your phone for the volume to work.)
Everyday I wake up and my face is so swollen especially under my right eye, and my right arm and hand as well. I only sleep on my left side or my back so it’s not like that right side is being compressed or anything. On Oct 11th I developed numbness in my waist down and I had decreased sensations thru my legs and my feet were numb. I literally could smash my toes into the wall and it wouldn’t even hurt. This has not gone away. My right leg is so weak it drags behind me when I walk. But if you remember from my hospital post the neurologist told me to start mobilizing more and the numbness would go away…. well I have been mobilizing a lot and getting up every hour and walking around my place holding onto walls of course because I am so unsteady on my feet. And guess what all the numbness is still here. And the radiating pain under my left ribs at the very bottom is still here too and my nausea, everything that was happening has not gone away.
Anyways I am using all my energy to get thru every day and that’s all that I can do. Since this video was taken since Oct 11th I haven’t been able to eat or drink too much so I have lost weight around 15 pounds I have no feeling in my stomach, I never feel hunger like I used to. Even the thought of food just makes me want to gag a lot of the time. I do force myself to eat 1 small meal a day after my Zofran (anti nausea) med kicks in, and literally before I am even finished my stomach bloats up like I’m 9 months pregnant. I only eat healthy home cooked non preservative and no wheat meals too. I feel so nauseated after it makes eating such a turn off. I realized that I spend much of my day feeling so nauseous. I have some Zofran meds but I have been spreading them out and rationing them out because they are super expensive says the pharmacy and I am afraid I am going to get cut off from pharmacare. It’s my only safe med that I can take for my nausea without having some histamine release mast cell attack.
It’s like the same with my pain meds I’m very limited to what I can take without having a adverse reaction or mast cell attack. I’m scared my GP won’t prescribe them anymore so I lay here in agony even tho I am used to severe pain there are a lot of days that I am too worn down to handle the pain. I only take them when it’s at a point that I don’t think I can go on any longer. I used to be able to lay down and my neck would relax to some degree and my migraine would go down a notch to a more manageable level but for the last 2 weeks it’s just there day and night at every moment and the minute I move or stand up my skull thunks around.
It’s really scary trying new medications especially when your not being monitored in a safe environment that you could access immediate help. I started this med for my migraines in hopes it would help it was Topiramate and I literally had such a strong adverse reaction I was so loopy I was saying weird things and I couldn’t focus at all, it’s like I had just drank 5 beers constantly for over 2 weeks. My parents witnessed this and they were very worried. It took almost 2 weeks for me to feel normal again after stopping it. Trying different medications does not do well for me.
I have heard of some people getting their DNA tested to what medications their bodies can metabolize and I am considering this because then I have proof when I am offered a new medication it’s literally like playing Russian Roulette with my life with how my body will react and it’s just too scary to chance. I need proof that I cannot take these certain things and that when I find a safe med that’s why I am not switching to anything else. I know my body and if we find something that works let’s not rock the boat, let me stay on what’s working for me.
The thing is not having a EDS Knowledgable informed doctors is they don’t realize all the little things that go along with EDS which is we metabolize things very differently than a average person. After my first surgery (With the non EDS surgeon) the nurse said wow Sarah must have been taking a ton of pain medication before surgery because we’ve had to give her huge amounts of anaesthetic and pain meds to keep her calm during and after surgery… my parents were like no Sarah is very conservative and only takes anything when she can’t tolerate it anymore because I am so allergic to so many meds…. the nurse and surgeon ran back to the recovery very fast my parents told me….. they ran back to tell the anaesthetist I never take all these pain meds..
A lot of EDS patients take huge amounts of freezing like when we’re at the dentist when we say we can feel it still believe us! Even for anaesthesia we need more than a average person as we can hyper metabolize these types of medications and if it would take say 4 hrs for a average person to process the med it could take a EDS patient 1-2 hrs half the time. It’s these little things that make it so critical that EDS patients have and receive medical care by informed, Knowledgable EDS specialist physicians for safety. We are not trying to be difficult but we do require specialists that have done research and know these things. I had no idea about this until after my last neurosurgery I was in so much pain because I was hyper metabolizing the meds and by the time the next dose could be given it had worn off hours ago. I came to my follow up appointment a couple days after being released from the hospital and Dr. Henderson knew this right away and said I need to have a dose more often. Another strange thing is for some reason if I take Tylenol I have a crazy adverse reaction and it’s just Tylenol and my body literally cannot process it at all. That’s why this DNA metabolizing medications test is a really good idea for EDS patients. In Canada this is the company I found and you can go into a pharmacy that carries this kit and they do a simple cheek swab. https://www.mydna.life/en-ca/about-us-4/
(This is a screen shot from my most recent supine static mri…. I just roll my eyes because my spine is not ok and I have physical proof! I have in the first red circle a retroflexed odontoid so imagine when I am up sitting upright and bending forward that pushes right against the brain stem. The bottom red circle a central disc protrusion and they aren’t doing anything about it saying that my mri was completely normal…. so they don’t realize that even a small micro stretch on the spinal cord can cause so many problems. When will doctors start being doctors and pulling their fingers out of their ears and start listening to what their patients are saying, listening to the symptoms instead of denying they could feel any of this, I understand the symptoms may not fit in your box but why not be open we are not here to waste your time, we are here because we are asking for help. Dropping us patients because it’s going to take some elbow grease to get to the answers is not fair. Treat us like we are your family please all we want is some respect and care. I am saying this in a respectful way I really truly want to know why this is happening.)
Well I will wrap up this blog post here. I am just wanting to be open and honest about what goes on here because being silent and quiet about these problems for EDS patients in Canada hasn’t helped anyone thus far. I will make noise about this issue and I will speak out about it because that’s the only way change happens is when people bring awareness to the issue. There have already been over 40 Canadians that have had to pay out of pocket left in financial ruins to self fund and go and get neurosurgeries in the USA. Canada needs to do better and let the surgeons that have offered to train the Canadian neurosurgeons start doing this if there are any interested Canadian neurosurgeons. It only takes 1 to get on board to make a change for EDS patients living in Canada. If none of the Canadian neurosurgeons are interested in learning or being involved in these types of surgeries it’s completely fine, no one is being forced to perform these specialized surgeries here but they need to voice their decisions. Canada then needs to start approving the out of country funding, something has to give so Canadian EDS patients can get these life saving surgeries they so desperately need. Don’t all Canadians deserve to live a quality of life? A life that they can live and finally escape the just surviving mode!
We are all equal and we deserve to be treated as equals and the out right discrimination going on against heritable connective tissue EDS patients needs to stop. We should all be outraged as Canadians that this is happening in our “amazing universal health care system”; a system that is seemingly allowed to pick and choose who they will or will not help.
I’d like for you to just imagine for a moment the next time your sick and need care and how awful you feel and the medical professionals denying all that your feeling and telling you there’s no way you could feel like that, your symptoms aren’t real. Your being denied any validation as to what your going thru, your family and friends witness how physically sick you are and there is not a thing they can do to help you. What would you do? Where or who would you turn to? What if the only help was in another country and you had to pay all out of pocket to save your life. Would you sell your home and all your assets? Only to come home after your life was saved but you have nothing left, and your friend or neighbour was having the exact opposite experience because they had some common known condition and were treated without any hesitation.
You come back to Canada after getting your life saved only to receive no follow up care and to be alienated because you went and got care in the only place that it was being offered. What would you do? How would you feel? Imagine going to your GP’s office for follow up care and being looked at like your some alien and they didn’t believe you and all that you had been thru. You try to hand out published medical articles to help educate them on what you are or have been going thru so they can better help you and they refuse to even read your articles or educational papers. Do you wake up screaming as if you feel like you are trapped in some nightmare? This is what it’s like for Canadian EDS patients, only it isn’t a nightmare it’s real life for us the only problem is we are trapped and we can’t get out. Where is our help? Where are our fellow Canadian citizens to stand up and be voices for us? We need all the voices to stand up for us so we will be heard and acknowledged. The more knowledge out there the better for all of us.
It’s a very simple first step that Canada has to take either the Canadian neurosurgeons are interested in learning the specialized techniques and special requirements that EDS patients need or they are not interested. A simple yes or no and the next steps can be taken. Unfortunately time is not on neurologically suffering EDS patients sides. We tend to decline neurologically quite rapidly once a certain threshold has been hit and then it becomes an emergent situation to receive these surgeries. Would it not be safer going into these surgeries before our symptoms crash out of control? Before EDS patients have to suffer more? We need care now and we deserve answers now, many of us have already suffered for far too long. When and what will it take for us to be heard? When will we get the answers we deserve Canada?
I can’t believe I am just 2 weeks away from my one year post op C1-T1 fusion on November 29, 2017. In many ways this year has gone by very fast and other parts seem like they have gone by in slow motion. I am happy to report the areas that I have fusion are fusing and are stable. I am now having problems with my skull sliding around. It is pretty terrible the sounds and thunking my skull makes. It is such a huge relief when it thunks into place, I only wish it would stay in that position. I am still wearing my rigid cervical collar when I am up and out of bed. When I am in bed I take it off to give my poor jaw a break from the pressure of the brace. Having it on when I am up provides some relief, however I am not able to be upright for very long. I am most comfortable laying in bed with the head of the bed raised up.
My very good friend sent me a travel sized “My pillow” and I swear by this pillow it helps keep my neck in the most comfortable position, I never go anywhere without it. I should add this to the section of what has helped me temporarily part of my blog, I highly recommend this pillow. I have tried so many types of those travel U shaped neck pillows and nothing comes even close to this pillow. This pillow gets 2 big thumbs up!
Currently I am experiencing daily migraines and neurological symptoms and severe pain. Pain is something I absolutely hate talking about. Its very subjective and no 2 people in the world experience or percieve it in the same way. A lot of people with Eds have high pain tolerances as we have been having joints sublux or dislocate all our lives, and thought that was normal and happened to everyone, or have been told the all too common “its just growing pains”. We have just lived with this pain for as long as we can remeber so it is “normal”. My pain started when I was around 5 years old and my sacroiliac joints would sublux and I would be rolling around on the floor trying to get them back in place. For me personally I can take a lot of pain and it takes a lot for me to break down and take anything. I can deal with pain any day as I have developed my own coping mechanisms. The one thing that I am not good at coping with is neurological symptoms. They are just something that I cannot handle. The brain fog, the lightheadedness from compression of my brainstem, the migraine associated symptoms so terrible I literally cannot keep my eyes open my ears are so sensitive, my head feels like a over filled balloon and I want to take a knife and pop it to relieve the pressure. The chronic nausea, the inability to speak and when I do a jumble of slurred words just spews out. My walking with having to hold onto walls feeling like I’m drunk but I never drink. My right leg drags behind me like a heavy dead weighted cement block. The electrical buzzing my nerves do in my feet and thru my body. I wish there was a off switch so I could press stop immediately. My favourite time of day is the 2-4 hrs of sleep I get because for those hours I get a break from all of these nagging, raging symptoms, until I wake up gasping for breath because my neck was in the wrong position. The neurological symptoms are all consuming and I just want to close my eyes and fall asleep again but then my adrenaline levels spike, thank you pots and I am wide awake all over again.
I don’t want to repeat myself as I will post from my FB page here but currently I am facing Tethered Cord Syndrome, and very possibly needing my skull C0-1 fused now another gift of Eds. I have such decreased sensations throughout my legs and feet that I have lost some hope that I will ever feel them again. Actually from my waist down is all affected. I cannot feel anything in my abdomen. My bladder could be super full and you know that feeling when you hold it a little too long I don’t have any sensations of that anymore. I could push down with a over full bladder and normally that would be so uncomfortable but for me now I have no sensations anymore. Is this frightening? Yes, what would a normal person do when this happens seek medical care right? Well this is where I am stuck yet again in the Canadian medical care system. They did order a mri of my spine but the doctors and radiologists looking at my imaging are looking thru the goggles as if I was a normal average body. They are not educated on what Eds is and so I have the label of “normal mri” again. Well I have bulging discs throughout my thoracic and lumbar spines but that is a normal mri for a 36 year old. I tried explaining that for a average person this may be normal but with Eds we need Eds knowledagble specialists to truly review our images to get a true answer about our imaging.
I was in the hospital for 18 days because of my numbness and urinary retention and severe nausea and not 1 thing was done to help me. I was told to walk more and the numbness will go away. Is this not outrageous? I went to seek professional medical care and was in hospital for 18 days and I did not get any help. The only help I left with is the nurses standing up for me and convincing the doctor to give me a picc line to do my own saline infusions at home as I am not able to drink enough fluids to sustain my body. With me having pots its absolutely essential that I get 3L of water into me each and everyday as per my electrophysiologist. Am I frustrated, very but am I really surprised that the only help I can get is returning to the USA to my Eds specialist neurosurgeon fully out of pocket? No there is no help in Canada and I tried several times to see if the doctors would at least have a phone call from my neurosurgeon or read some published medical journal articles that I printed off and all to no avail, as soon as I brought it up it was met with much resistance and annoyance. Am I asking for too much? All I want is to be able to feel from my waist down again and be able to urinate normally, and not having to push down on my bladder and lean forward.
I wish I had this lecture handy when I was in hospital, of Dr. Petra Klinge a world specialist on Tethered Cord Syndrome her and my neurosurgeon are colleagues. Dr. Klinge states in her lectures several times that “standard mri imaging will be read as normal” when there is truly a problem that is not being seen. These world experts are very willing to teach Canadian neurosurgeons as well as all their lectures are available on line for free. There is published medical journals of all these Eds related conditions so why is Canada one of the leaders in health care so behind the times of this? Why do some people with conditions have people to help them here but anyone with Eds completely gaslighted abut there medical conditions? I can’t believe in this day and age with all of the technology that is out there Canadas health care system is choosing to ignore all of its Eds patients. I will say this if any one of these doctors has a child, family member experiencing this they would know that something must be done. It easy to sweep this under the rug until it personally affects you. I am needing proper medical care from the Eds experts that have spent time educating themselves about Eds and all the conditions that can happen with a progressive syndrome.
I have to share this video of Dr. Myles Koby, now this man deserves a award for standing up and helping out EDS patients. He is reading imaging properly and the way it should be read for EDS patients. When imaging comes back as normal on a EDS patient it isn’t being read properly or the right imaging hasn’t been done. Thank you Dr. Koby for helping out EDS patients, you are saving so many lives.
(A slide from one of Dr. Klinges lectures.”in connective tissue disorders, tethered cord has little radiographic evidence but shows intraoperative abnormal findings”.)
In 2017 my family and I spent $124,000.00 to get my neck stabilized. After I came back from my surgery because I had it done in the only place that would help me (USA) I have been treated like a disgusting parasite. I am only asking to get treated fairly as anyone would expect here in Canada. If Canada doesn’t want to treat Eds patients then they should be covering our medical bills portion of our costs to go to be seen by the Eds experts. If something is not available here in Canada we have the right to care or are Eds patients intentionally being discriminated against? These are questions that my family and I and friends and all the other Eds patients Canada wide would like answers to. Eds is a complex syndrome but in the end we were born this way, we did not cause this. The fact that it takes years or even decades to get a diagnosis causes progressive deterioration of our bodies and many Eds patients do require multiple specialists and sometimes multiple surgeries and medical care due to the delayed diagnosis of not knowing so proper measures were not on place to protect Eds bodies from damage.
I did a public post on my FB page what I am currently facing and think I will copy and paste it here as well as a couple of Dr. Petra Klinge’s lectures. Dr. Klinge is a Germany trained neurosurgeon working in Rhode Island, USA. She is another expert well educated on Eds patients.
(A very accurate picture of what Eds is like, structurally we have faulty collagen holding us together.)
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My Facebook post:
I am making a public post on my treatment that I have received at the Cowichan District Hospital in Duncan, BC on Vancouver Island. On Oct 11th I woke up and was numb from the waist down. I came to the hospital and they did a lumbar mri and it showed clumping of my nerve roots at L2-3 and possible Sacroiliitis. I was sent home and told to call if things did not improve. So I called and a brain and full spine supine mri was ordered. This new mri showed bulging discs thru my T and L spines, and to look into T7-8 area if that was bothersome. I will mention I have Eds (Ehlers Danlos syndrome) and pots (postural orthostatic tachycardia).
On Oct 22nd I could not urinate I had urinary retention and came to the ER to be cathed and was admitted and cathed again the next day as well. I explained how my abdomen was numb and also my legs had decreased sensations and electrical shocks down them and the only way when I was able to urinate was to lean forward and push on my bladder. I was also having many severe mast cell reactions I will post some photos and this was just brushed off.
They send in this neurologist Dr. Moll and he tells me that my neck cannot be that bad and that I need to stop focusing on my neck and I will get better. He was very condescending and completely closed minded. I had my neck fused because I was at risk of stroke or paralysis and I could have died they gaslighted me about this too. He never mentioned a single thing about my numbness down my abdomen and waist and told me I need to be more active and I will be feeling better. He said my mri was completely ”normal” and my spine is totally fine. I offered this article to him and without hesitation he said no he would not read this.
I end up with a bad bladder infection probably from being catheterized so they give me some oral antibiotics that I reacted terrible to and couldn’t move or speak. They switched me to IV antibiotics and I was still very nauseous but able to function still.
I contacted my neurosurgeon in Maryland as he knows my Eds body and the condition that my spine is in. The thing is for a average person a disc bulge may not be a big deal but when you have eds a disc bulge is huge because of our faulty connective tissues. This is how my neck was and NO ONE believed me. I can’t tell you how many times I was gaslighted about this. I know my body and when something is not right. I rarely ever seek medical help because I have medical ptsd because of all the years of abuse I suffered trying to get answers for my neck. They can look at my charts I never ever come to the hospital unless my body is fading and I know I am in serious trouble.
My electrophysiologist insisted I need to drink 3L of water and 2 tsp of salt per day for my autonomic system to function normally. For the last month I have not been able to consume fluids or food in any amount that would be considered to be a minimum requirement for a day. I get very dehydrated very quickly and things go south when this happens.
I came here seeking help and today the Dr comes in and says he is sending me home on oral antibiotics and I said please look in my chart and see my reactions to the oral ones I was given and that I am allergic to many medications. He comes back 10 mins later and says no you can go home without anything. I said what about my fluids and he said you can’t have saline every single day. I said I understand but until I can drink that amount I require I do. I need help, he said 3L is easy to drink and there is no reason why I cannot drink that much. I explained my nausea and how I am taking Zofran every 8hrs and that is barely holding me. I said anytime I eat or drink my stomach is paralyzed I literally cannot feel anything in my abdomen since Oct 11th.
I also explained how I need home care because I need help with showering now and making my meals and laundry etc I cannot do basic things my gait is so unsteady and my right leg drags behind me like a cement block. He said he would arrange home care I just spoke with them and we are trying to arrange a picc line so I can get fluids at home.
So I am being discharged unable to consume enough food or enough liquids and told to go see my family dr and she can arrange for my numbness to be looked into.
My neurosurgeon sent me a text and he said I have tethered cord syndrome and most likely my skull is loose which I can feel it clunking around all over. I need to get back to Maryland as soon as possible my surgeon is the only one who understands this. I have no idea how I am going to do this. I am on disability and I am not getting the proper care I need here in Canada. I never asked for all this in my life. I have been fighting for over 4 years. It’s so unfair that I have to fight for care in this country, it’s not my fault that they don’t have the knowledge of Eds and all the neurosurgical complications that go along with this.
How do I raise money so I can go get my spine fixed? How do I get the government to see me and help me out here? I already spent $124 000 in 2017 for my neck surgeries I sold my house, used my parents retirements savings what can I do now? I have zero assets now I have zero to offer because I am pretty much bed ridden again. I feel like a beggar asking for help but I really don’t know what to do and honestly I have been thinking a lot about physician assisted suicide. I just want peace in my life, I am tired of the constant battle. I rely on my parents to do almost everything for me. At 36 I am feeling like a drain on society and see my parents exhaustion in having to care for me and all the worry they go thru. It’s just not fair. I don’t want anyone to feel sorry for me but this is my reality. I just want to be able to live a quality of life or I can’t be here living like this, I have no quality of life and people don’t realize how bad it really is for me because even on my worst days I still smile and pretend I am okay and when I can’t, I hide away from everyone because I don’t want to surround anyone with how bad I have really been doing. I don’t want sympathy or people to feel sad I just want people to realize how bad it is here for Eds patients and neurological issues.
How would these Drs that are dismissing me feel if they were numb down there and couldn’t urinate properly and were experiencing neurological issues? This is just insane and I can’t believe people are treated this way. I am not the only one facing this in Canada and other parts of the world.
I’m doing what I can to get thru but honestly I am so exhausted I don’t think I can continue with my fight. I need a neurosurgeon in Canada to sign the out of country funding form and the problem is there is not one that has been willing to do this for the over 40 of us that have had to go to the USA for help.
I am at a loss for words now and I am so scared that I am never going to feel my abdomen and legs again I need help from a Eds Knowledgable neurosurgeon in Canada but where are they???
Seriously what am I suppose to do? Stuck in Canada with no help please anybody can you help or have suggestions? I did a Go Fund me with my first surgery and although I am so appreciative of all the support I received it wasn’t super successful for the very large amounts of money it costs for surgery.
My last surgery they required $20 000 US just for me to book and have surgery and day 1 this did not include the surgeons fee $10 000 US or the Anaesthesia fee $2400 US and all the imaging I required. I then got a bill in the mail saying I owed $40 000 US more for the 4 other days I was in hospital post op. This is huge amounts of money 😢 how does anyone even do this? I contacted them and explained my situation and I live on $1100/month Canadian and asked about charity help but that is only done with a leftover bill post op or post hospital stay nothing before any surgery can be done.
What do I even do? 🤷🏼♀️I have been trying to stay positive and keep going but at what point is it ok for me to give up? I can’t do this fight alone.
Some people may ask but you had 2 neck surgeries already why would you need more surgery? This is where Eds comes in, as a person with a Eds body and having faulty connective tissue this leaves the body deteriorated and weak. A lot of Eds patients require multiple extensive neurosurgeries before there spines can be truly stabilized. The tendons and ligaments that keep bones and joints stabilized (Hold the body together) don’t function for Eds bodies, instead they act like gooey cheap bubble gum and where the spine is weak it is like a domino effect. Eds patients need medical care and neurosurgical care to be able to live with some quality of life after years or decades of delayed diagnosis.
I have only been met with road blocks and medical gaslighting. I come back from my surgeries only to be treated like I am some disgusting parasite. Tell me why do people with Eds have to suffer in the Canadian Health care system? Most Eds patients are providing their Doctors with published medical articles and educational peer reviewed papers trying to engage them with the up to date knowledge in order for them to receive the proper medical care they require. It’s a constant battle every Doctor appointment seeing the disbelief and the judging eyes second guessing that my symptoms can’t really be that bad, if only they could feel what I feel for 5 minutes they would know something has to be done.
This is all across Canada, our health care system is failing Eds patients, how many of us have to become bed ridden to the point of death before Eds is recognized in the health care system across this country? When will Eds patients get proper medical care and Knowledgable neurosurgeons that can help us live a quality of life? How many more lives will it take? How many more families have to be destroyed emotionally watching their family members deteriorate only to be destroyed financially with these surgeries that are only available out of country? Denied coverage of any kind unless you can find a Canadian neurosurgeon to sign the papers….. It never happens.
I can’t believe I live in Canada and cannot get access to the medical care that I and many others desperately need, because there are no knowledgable neurosurgeons that specifically deal with upper cervical fusions for Eds patients specifically with instability that need skull (C0-C1 and C1-2) fusions and understand Eds and Tethered Cord Syndrome. When will Canada get a public accessible upright MRI machine to help diagnose patients as we are with gravity and in the positions when we have the most pain…after all we don’t usually spend our lives laying down.
(The pictures aren’t the greatest but these just show some of the mast cell reactions I was constantly having. My skin felt like it was on fire the nurses kept bringing me ice packs to apply to my skin, they were shocked to say the least at the extent of the reactions I was having.)
(My parents brought my dog Roxette for a visit the other day 💜 first time I smiled in the 18 days I’ve been here.)
(My picc line.)
(The day I left hospital, still no answers but determined to press on and keep fighting for answers “Strength is someone fighting Ehlers Danlos syndrome with a smile on their face”. )💪🏻 **I was mostly excited to get home so I could snuggle with Roxette in my own bed!
As always if you read this far I sincerely thank you for your support. I will continue to fight for care for Eds patients across this country. I won’t be quiet anymore and I won’t stop sharing education out there. I have to believe that one day some Canadian specialists will be reading this and something will click and they will know they have to help Eds patients. It could just be that 1 person to make a change in the lives of zebras across this country. As they say the squeaky wheel gets the grease, there are too many Eds patients suffering and becoming more debilitated each day this has to change even if it’s only one story at a time. 💜
I must first apologize it’s been almost 5 months since I have done a update. How is that even possible?!! Time sure flys by especially the summer and Autumn seasons. What is your favorite season? Mine is definitely Autumn without a doubt. I love the color changes on the trees and the orange crisp leaves crunching under my feet. Sadly I have missed this season as I have been mostly bed ridden. That’s the good thing about memories you can always dream about them.
I guess the last blog entry I posted was me about to head off to Calgary to see the autonomic specialist (electrophysiologist) Dr. Raj. Well that was a really difficult, exhausting, uncomfortable trip. I had to be off all my medications for 3 days prior to the testing. My pots (postural orthostatic tachycardia syndrome) was in a bad flare because the Labetalol keeps my heart rate in check and also helps my chest not feel like a elephant is sitting on it and helps with my adrenaline levels which helps me to not sweat like I am in 100 degree sunshine. I literally was in dire straights I was so tempted to take my Labetalol because it was pretty terrible, but I didn’t and roughed it out.
(Me on my way to Calgary)
At the airport the staff are always super accommodating and knew I needed wheelchair service. The flight was only 1hr and 20mins or so but it was long enough to drain me of any energy I had it was July 30th and we were having a heat wave. I made it to Calgary and my Dad and Debbie were there to pick me up and brought a wheeled walker so they pushed me around on that while I was there.
On July 31, 2018 my parents and I went to the hospital and I was checked in and brought to a room that had the (TTT) tilt table test. A heart rate (HR) monitor was placed as well as a blood pressure cuff (BP) on my arm and a blood pressure cuff that went around my ring finger. A IV needle was placed as they would need to draw my catecholamine levels when I was at rest and if they stuck me with a needle that alone would send the levels up so they did all this before hand.
I was left to relax for 10 or 15mins and then a baseline pressure was taken and I was having a hard time laying flat because I hadn’t taken my Labetalol so I found it hard to breathe laying down flat so the tech raised the bed ever so slightly and the nurses in the room were like wow just a slight tilt and her BP soars. I was like yes any tiny change in position and my heart races, even turning over in bed it’s ridiculous.
After laying slightly flat they then tilted the table up and I was seeing stars and felt very lightheaded but I kept my focus as the BP cuffs were tightening then relaxing and the tightening every minute and I had to report what I was feeling throughout. The room was cool but had it been hot I would have probably passed out.
As this testing went on I had to hold my breath and then breath fast and then slow it was pretty difficult to get thru. They also drew blood while I was relaxed and then when I was tilted upright to check the catecholamine levels. And at the end I sat in a chair and then stood up and my BP and HR were measured.
I was so thankful I didn’t pass out because I was worried about my neck being injured. It was a gruelling test but I did it. I felt so awful afterwards my neck was not happy with all of this position changes etc. After the testing was completed my parents took me back to the hotel so I could lay down for a couple hours until my appointment with the specialist.
It was hard to go back my neck was crunching and thinking I could feel my skull slipping and sliding into place. I couldn’t help it tears streamed down my face it was absolutely agonizing. The nurse saw me and knew I needed to lay down. Thankfully she brought me to a room to lay down on a stretcher and they did a EKG. A resident came to do my initial interview and then Dr. Raj came in afterwards.
A lot of questions were asked and I felt frustrated because I was not understanding some of the questions. Until you experience neurological symptoms and severe brain fog you cannot imagine the energy it takes to understand questions they may seem simple and straightforward to a healthy person but for someone that struggles it’s like speaking a foreign language. I was so happy to get out of that appointment. I hate being misunderstood and not able to explain myself, I did not understand any of this until I experienced it so a lot of people can not relate and I am glad because it’s so very frustrating.
We came back to the hotel and my parents went to get some dinner for us I just layed down and balled my eyes out from sheer exhaustion, pain and I felt defeated in a way too. I was going over the conversation and thinking why could I not have just said what I am thinking of now after the fact. The specialist was kind and really Knowledgable but he also does not have much knowledge about Eds and how bad the neck can affect the Dysautonomia. I felt frustrated because I know he has seen other Eds patients but because these 2 syndromes go hand on hand usually I wish he was more informed about the neck instability in Eds patients.
I was officially diagnosed with Pots. His suggestions were to Start this new medication Methyldopa, to drink 3L of water daily and 2 teaspoons of salt. He said that I am drier than the average person so I need to make sure I get these fluids in for sure. He also prescribed the use of compression garments for the thighs and the abdomen as those are the main areas that have the most muscle and need to be compressed to allow blood flow to not pool in those main areas. He also suggested a rowing machine or a recumbent bike.
The last 2 suggestions are great if you don’t have joints that sublux or dislocate. I have bad shoulders and knees and a unstable skull so this is just not possible for me at the moment. He said you have to start this and work at it for 5 months before I would notice any improvement. I did all the things he asked except the recumbent bike. If my head was screwed on my neck properly this would be easy but when you have a loose skull any movement is not good.
I am grateful I was able to get to Calgary and have this appointment and I am grateful for all my parents for the care and help they give to me thru each step of my journey.
For 3 months I lived drinking water and consuming salt like it was my full time job to make sure I got that 3L in. I even purchased some salt tabs so make sure my electrolytes were good. That’s the main thing about Pots is you need to have balanced electrolytes. I found these on amazon and I think they work pretty well. ( Salt stick tabs).
I am suppose to have a follow up appointment at the end of November but I am calling to see if that can be a phone follow up as there is no way I will be able to fly back there at this time.
The extra fluids have helped me a lot as well as taking my Labetalol and the new medication he gave me called Methyldopa. For the first time in over 4 years my BP is normal! And my HR is steadier than it has been. I hope this continues because it’s so nice to not feel some of the effects Pots does to the body.
The day after my appointment I flew back home and it took me almost 2 weeks to recover from that 2 nights away from home. I could barely move I was completely exhausted and my skull felt like that trip made it so loose.
Travelling when you have chronic illnesses is a feat and I am officially hanging up my travel bag. No thank you it’s definitely not worth it for me anymore. The cost I pay with my body and energy levels after any travel is not worth it I always end up going on the downhill curve and it’s just too much to take. It’s probably very good that I am a complete home body and I am just fine staying home. I can control the environment around me noise wise and light wise and temperature wise I like my place cool. Travelling is just not in the cards for me anymore, my body pays too high of a price and I don’t regenerate or recover like I used to.
I am happy that I had this appointment with this specialist as he is the only one in Western Canada that truly specializes in Dysautonomia (pots) and belongs to Dysautonomia International so I am very fortunate I got in to see him. I have a official diagnosis now and know what I am able to do to help myself. I do know that I will have good days and bad days at least I have the knowledge to help myself on the bad days and know that less symptom days aka good days can be ahead!
(Some pots humour lol)
***(I will add in how my follow up visit goes at the end of this blog. )
Hello, 😊 and here we are already into another season! ☀️☀️Happy Summer to you. Doesn’t time just fly by at times. I cannot believe it’s been 7 months since my second neck surgery, some days it feels like it’s only been a few weeks post op.
(I have added a lot of quotes for my fellow chronic illness warriors as we can all relate and sometimes we just need to feel validated thru all the chaos).
The healing and recovery has been really intense and I will admit there has been a lot of hard, frustrating months that I felt like I just wanted to throw the towel in and give up, but I somehow managed to push thru. It’s hard to answer the question that many ask me how my neck is. A normal person without EDS can take up to 18 months for this fusion to fuse, and having EDS increases this time. I have been told it could take up to 2 years or more until I start feeling human again. This was a major surgery and then add in that I had 2 major surgeries to my neck. This is not a surgery like a appendectomy where you have surgery and you get better and never notice it again. This was neck and skull surgery. With my first surgery I had a piece of skull removed and my neck was so unstable it was compressing my brainstem. Having Ehlers Danlos Syndrome (EDS) has been making recovery complex and very challenging at times. I wish with every fibre in me I could say I am amazing I am doing great but I would be lying to you. The truth is my neck still bothers me every single day. In fact a lot of my days I am battling with my body because I want to do so many things but I am slowly learning and understanding my physical limitations are a lot more than I had hoped that they would be. I am in disbelief as I think back to how long it has taken me to get a diagnosis of EDS, I had many many signs of it when I was younger so that makes it 20 years before I received my diagnosis! As the saying goes now “When you cannot connect the issues think connective tissues”.
This is a video explaining EDS and shows how long it takes for people to get diagnosed, the years it takes is unimaginable. This is years of people being told there is nothing wrong and given many wrong diagnosis. #ItsOurTime to have access to manage our symptoms and get help. We have lost a few of our zebras this year already because we don’t have proper access to trained specialists that understand EDS. Many people end up giving up because after you go to doctor to doctor being told nothing is wrong we lose hope. There are many Canadians and people from other countries that don’t have access to the proper dynamic and upright medical imaging here and the only specialists are in the USA or Barcelona which is all out of pocket because Canada and some other countries don’t have specialists to perform these life saving surgeries that are needed. Many surgeons hear you have EDS and no lie they run away fast and refuse to touch a EDS patient because we are complex and require extra care. The word is spreading about EDS but it will be many years before it is common ground like other illnesses are understood, as they were once thought of as rare as well.
Just the other day my mom was driving me to a medical appointment and I saw a sign and it was for the zip line and I said “Do you think I would be able to do that, that was so much fun!!” …… My mom …are you being serious Sarah? I’m like yes for real….. she reminded me that I can’t turn my neck left or right and I can’t look up or down so how would I be able to navigate walking on a narrow platform and climb up to the zip line. You don’t realize how much you use your neck in day to day life until you don’t have use of your neck anymore. Why would anyone even have think about it because for most people it’s a normal motion just like it is to see and hear, you never have to think about these things they are automatic, well until they aren’t. And no I won’t be going zip lining or even running, my limitations are many and it’s just taking me time to really understand them. I had some X-Rays taken a little while ago as my thoracic spine has been bothering me. Turns out I have some scoliosis and some degeneration of some discs and osteophytes on multiple vertebrae. I am sure this is not helping my poor neck out as you can see.
My new way of living is very different than I could have ever imagined. I am not able to look left or right because of my fully fused neck and I do have some slight up and down but I am not suppose to do this because I don’t have my skull fused to my C1 and if I continue to try and look up and down I don’t have anything stabilizing my skull so I could end up needing further fusion surgery and that is just not a option that I have. My neck is fused but because of the EDS which is in my genes which makes all my connective tissue faulty and connective tissue is everywhere in your body, so the only thing stabilizing my neck is my muscles. My muscles have been cut from the 2 surgeries so they are very tight and very tired and really there is very little support thru my neck. I still have some clunking going on and I can feel my skull moving around and another vertebrae that is not fully stable. I still do wear my neck brace a lot because not wearing it, my neck is moving around a lot and I get dizzy and it just worsens my daily migraines. I will always continue to have to use my brace for support. For the rest of my life it must be worn in a vehicle and at night for sure and also if I do have to bend at my waist to look down I need the support of my brace. I am fine with this because it feels better with it on than not. It’s surprsing how you get used to wearing the brace, it’s just like putting on another piece of clothing. During the day when I am laying down I take it off and its usually off between 1-5 hours a day depending on the day. I am still very thankful to my neurosurgeons Dr. Henderson and Dr. Rosenbaum my quality of life is a lot better than before surgery. They saved my life I don’t have to fear stroke or paralysis now. They are my heroes. I’ll post the link to their clinic in Maryland here. This is the very best team in the world!
I saw a geneticist in April and it was confirmed that I do have EDS. There are over 13 types of EDS and all of them have a genetic marker except for the hyper mobile EDS type. She did apply to the BC Health to get funding for the testing to rule out other types of EDS but that takes up to 3 months for approval and then if it is approved I get some blood drawn and they send it away and it can take another 3 months to get the results back. So the geneticist says its hypermobile EDS unless the testing comes back showing another type of EDS. I will post more about this later when we find out. My geneticist said I am a very complex patient and I will need care from many different areas of the medical field. I just wish that all the specialists I see, for once I could walk in the room and they knew what EDS was without having to look it up with their out of date information, and without doubting me that EDS can truly be a severely painful syndrome. I have read Dr. Forest Tennants website for pain management and this is what his thoughts are now if only more people would educate themselves on EDS and the pain that can come with it.
I do still suffer from daily migraines, severe pain, and I can tell that my CSF (cerebral spinal fluid) is not flowing properly which causes a lot of pressure to build up in my brain. I have a lot of muscle spasms and my SI joints continue to sublux daily as well as my shoulders and clavicles and elbows and hips and knees. A subluxation is a partial dislocation so my joints don’t fully dislocate but they partially do and I maneuver and you can hear them clunk back into place and it’s like the biggest relief it feels so much better after they relocate. I use braces and kinesiology tape to keep my joints in place during the day time when I am up and moving around, however during the night I don’t wear them except my neck brace so anytime I turn over or move you can hear my joints clunking around and even my neck still too. I did get a new adjustable bed which has helped me to have less subluxations in the night.
I am still not really able to sleep very much due to my severe Dysautonomia POTS (Postural Orthostatic Tachycardia Syndrome). I also have to sleep with my head raised a little bit otherwise my heart just goes crazy from very low beats to very high beats non stop up and down. This means that my autonomic nervous system is not functioning properly, things that you can’t consciously control like your heart rate, blood pressure, breathing, sweating, and blood flow is not working in my body. What does this mean? It literally feels like you are dying. If I sit up too long, if I take a walk, if I am in a warm environment, any slight stress, my body doesn’t know how to handle any of this so I get dizzy and light headed and at times my vision goes black, I feel pins and needles all over and it is usually 1 side of my face and head goes numb and I feel nauseous, my cheeks turn bright red, and I get severe brain fog to the point that I literally cannot understand what anyone is saying. I know that someone is talking to me but I literally cannot understand the words they say are foreign to my brain. It is really scary because I know what’s going on but my body is unable to respond and I am totally incapacitated. For example this is why I am not able to go into stores anymore. I am extremely sensitive to lights, sounds, and if someone is wearing perfume or I walk by smoke my body can’t handle any of this and just goes haywire. I was in the store back in February with my mom and she went to grab some things and she found me in the tea aisle just staring at the shelf. She said what are you doing and I was barely able to mumble “I can’t find the tea” even tho I was literally staring right at it, my brain was not making the connection. She grabbed the tea and I held onto the cart and she literally had to guide me to the till and help me to the car. I wasn’t able to even speak and my legs I thought that I was going to collapse and I could feel my heart beating so fast it’s like I had just run a marathon. My brain loses the connection on what I am suppose to do.
I am not really able to get out of my house unless it’s for medical appointments and even after 1 appointment it sets me back 1-3 days that I am totally incapacitated in bed in so much pain and literally unable to move because my spine feels seized up and my legs and arms feel like they are filled with cement and I am unable to lift or move them. My brain tells my heart to run a marathon anytime I am in a upright position my heart rate goes to 120, I feel like I am gasping for air and it’s like I have a elephant sitting on my chest. It’s the sitting in a waiting room the lights are too bright I always have to wear my sunglasses inside and the sounds even if it’s other people talking it just feels so loud to me and then a person walks by covered in perfume and I know that I am going to suffer after this. Add in that most places are too warm for me to handle. I have to keep my environment really cool to cold because my autonomic nervous system has some how forgot how to cool my body down so instead it just keeps getting hotter and hotter and my face gets so red and the brain fog kicks in and then trying to get up and walk is nearly impossible, and this is why I now have a rollator, zimmer, rolling walker whatever you want to call it. I would have lost count on how many falls I would have had if it wasn’t for this device. Its been hard for me to even eat lately because it causes my heart to go all crazy, so lately I have only been able to eat a few bites like literally 2-3 forks of something and I am so full and it just sends my POTS into a flare and I end up feeling so sick that a lot of times I just try to keep fluids up and skip eating because I feel so awful after. I often have to sit down because I can feel my body giving out, this POTS is extremely disabling. EDS has several comorbidities and POTS is one of those. The specialists that understand and treat people with POTS compare it to living with dialysis for kidney failure, or having congestive heart failure have been the comparisons. It’s extremely disabling and again another invisible illness. I will be going to Calgary, Alberta at the end of July to see Western Canada’s only autonomic specialist Dr. Satish Raj. Its a whole morning filled with tests and I have to be off my meds for a few days and I am really scared because if I miss 1 dose I can barely walk and I have to get on the plane, thank goodness its only a 1.5hr flight but the thought makes me sick. I am hopeful he can help with some more answers about my Dysautonomia and get me on a better track so I have less flares.
(Here is a video about what POTS is from some of the best experts. I will see Dr. Satish Raj in July he speaks in the video).
Life is not what I thought or ever imagined it to be, never would I have thought I would be this way. 4 years ago my life was completely changed in one moment, and the thing about it I was doing something that I thought was keeping me healthy, little did I know how much damage was being done to my body. I know people say you shouldn’t live with regret but I do and I always will regret trusting anyone to touch my neck. I honestly did not realize how much damage could be done, I didn’t realize that having a neck injury could change a persons whole future. My future and not just my future but the future of my family because there is no sugar coating this, the truth is I am permanently disabled now. My parents help me out with most things every day and I couldn’t live without there help. I am dependent on people to help me out, with day to day tasks. I have gone from being 100% independent and living in my own home to being a dependent person. I’m 99% sure that I will never be able to drive again, I can’t go to the store alone I need help because of my neck and because of the POTS. The losses that I have experienced over these years is completely overwhelming. It’s like that saying goes “ It never occurred to me that one day I would wake up sick and never get better”. The truth is I may have good days but I am never going to “get better” because I have EDS and it is a syndrome meaning like it is in my genetics, no amount of this or that is going to fix it because it’s in my genes. I am sure people have good intentions but when I constantly hear “I hope you get better soon” I don’t really know how I am suppose to respond so I usually just smile because there is no getting better and that is just the plain truth. There will be better days for sure but I will never feel like I used to before this neck injury. I really do try to stay strong and stay positive but sometimes I am not strong and I miss my old life, and I am learning that it’s okay to not be okay sometimes. Things don’t always have to be going good and it’s okay to have bad days or weeks and I think that is where we gain our strength and courage. It is during these bad moments, as it truly does take great strength to pick yourself back up and keep fighting for better days. This is where you see just how strong you are. These are my favorite moments actually, to feel the renewed sense of hope and that yes I can do this! I feel like I can do life and keep going and even if these good moments don’t last long they always find a way to fill up that tank of hope which keeps me moving along on the journey.
I know when some people talk to me they say oh I shouldn’t be complaining my troubles are not as bad as yours, and you know what I don’t like that because everyone’s problems are just as valid as the next persons are, it’s like we are taught that we can’t have bad days or complain unless our troubles are really terrible. I always want to hear from you even if you are struggling, because at least then I feel like I am able to somehow help you and listen and offer some words of encouragement and it makes me feel like I am still part of the living world and I can still contribute some way to the real world, that I so often feel such a disconnect from.
I think that we are programmed to live in the future and that’s where a lot of our anxieties and frustrations come from. Who taught us that it’s not ok to just live in the now? The now as in a hour from now, the now that is this day that we are currently in. I know besides medical appointments my life has changed that I am no longer able to make plans for the future. I live in the now. My chronic illness has shown me what the now is. I could plan to go out for tea with a friend for next week but the truth is when that day comes I may not be able to leave my house, because my pain is too much or my POTS is in a bad flare. Anytime I do plan for in the future, I am quickly reminded by my body that no I cannot do that because I will most likely end up having to cancel the plans and then I carry around so much guilt for having to cancel. I hate having to cancel on people and I am sure people think wow she is so unreliable, and they wouldn’t be wrong only it’s not me that’s unreliable it’s my health that is. Living in the now allows me to be in control of my health and what my body is capable to handle in each given day. There is another side to living in the now and it’s the feelings of isolation and loneliness. These feelings that comes along with having a chronic illness. The old me would always have something in the future to look forward to and now that is just non existant. No one wants to hear a person is not getting better, I am sure it probably sounds depressing but many people that live with disabilities lose a lot of friends. There are various reasons for this and no one is at fault for this but until you are disabled and unable to leave your house the feelings of isolation and loneliness is truly heart breaking.
I can’t even count the times that you see your friends on line and all the fun things they are posting about, the traveling they are able to do, there is nothing wrong with this, its just normal life, they are able to physically do normal activities. Meanwhile while your just laying in your bed unable to move because of the pain, unable to even manage to write a comment or click like because your eyes are filled with so much sadness because at that point you realize that your not really living life anymore. Everyday your alive but it’s more like your just trying to survive the day. There are tears of grief too because you know that if you were well your face would be in those pictures with them. It’s hard to explain because I would have never understood this until I experienced it. It’s like I’ve been erased from life in many ways. I miss the old me, I miss the me that was able to be independent, I miss the me that was always up for visiting with friends, I miss the me that had the most amazing career, the self employed me that worked so hard to get to where I was, now just in the blink of a eye it is gone. Now it is just the gone me. As hard as I could try I will never be that person again. It’s seems weird but I don’t really know this new me. This new me is a chronic illness, chronic pain, this new me is a lot of times covered in braces to support my joints from subluxing, this new me walking around with a rollator, this new me is sometimes strong and sometimes weak, but one thing is for certain, this new me so far is someone who hasn’t given up no matter how many times life tried to knock me down. I don’t know who I am a lot of days because on bad days I don’t even recognize myself in the mirror because that blank stare pain face is not something that I am used to seeing no matter how many times I see that face that is not me. On the good days when I have my pain controlled to a certain degree and a real smile on my face, I almost have to do a double take in the mirror because I see tiny glimpses of the old me, that I thought I’d never see again. I just wish this would happen more often, and who knows maybe one day my new life will be filled with more good days than bad and I will gladly accept this with open arms.
I have thought a lot about if I could go back and change anything in these last 4 years what would they be? There are some things I wish I could go back and change, mostly to change how some of the trauma unfolded itself, but the truth is I have met so many incredible people thru my blog and my FB neck group and EDS and POTS people. Many of them have become great friends of mine. We are able to relate to one another on a level that others are not able to as we experience the same understanding of this neck and EDS and POTS and how this has changed our lives forever. I can’t imagine not having them in my life. I am grateful to have them in my life, to share tears and joy with them on the small little victories that we are still able to somehow accomplish. Some of these victories such as, managing to get out of bed and have a shower may seem silly to the able bodied soul but to me and my EDS and Potsie friends these are things we get excited about and cheer for each other because this is how we live now. We cheer for each other when we are able to make it thru a whole day of family events and the next day we lay in bed crying from pain and frustration of why can’t we enjoy 1 day of fun family events without having to pay for it for a day or two or three after. We understand and we hold space for each other until we are able to rise again and fight for another day like true chronic illness warriors do! I hope my life and my story will help at least one other person say because of your story I didn’t give up, if you can do this I can do this and together all of us warriors will get thru the rest of our uncertain days together. We will keep fighting like zebras and together we are a dazzle! 🦓🦓 I will not give up this fight for my good days no matter what. My life has done a complete 360 circle but my new way of living will just take some time getting used to. I won’t stop telling my story because in doing so it spreads awareness. EDS and POTS are common and so under diagnosed and a lot of us feel alone a lot of the time. The more we talk about this the less people will feel alone.
I ask that we all start to with hold judgement on others because there are many people fighting chronic debilitating invisible illnesses. The person that you see parking in the disabled parking spot may look “normal” and be walking just fine in your eyes but what we don’t see is their invisible illness. We don’t know how much strength it is taking them to walk a few steps into a building. People parking in disabled spots or sitting in the reserved seating on a bus could look completely normal on the outside but on the inside there could be a battle going on within their bodies. Disabilities come in all forms and some people do not need assisted devices to help them move from place to place. Some people need them some days and other days they don’t they are able to walk, not all disabilities look the same and a person could have good and bad days. It could change at any given moment, the best and most compassionate thing we can do is to accept the person as they are with assisted devices or not. I hope this helps brings awareness that next time anyone see’s a “normal” looking person using any of these services you will with hold judgment, because we don’t know the true battles anyone with invisible illnesses are dealing with inside of them, while still trying their very hardest to look normal on the outside.
With much Gratitude to each of you for taking the time and sharing in this journey with me!
Hello and Happy Spring!!! I am so sorry that I have not updated my blog in a very long time. I know a lot of people are wondering how I have been doing since my last surgery on November 29, 2017.
I will first start from where I left off. I wrote that I was about to head back to Maryland for my neurosurgery. Ok so my journey back from Georgia to Maryland was extremely emotional and completely and utterly exhausting in every way. This was another step in my journey that I needed to complete. My brother and sister in law and my nieces and nephew were the most amazing souls. They cared for me and prayed for me and held me in their hearts and were so giving to me while I stayed with them. I felt so much love in the few days that I was there. Tears well up in my eyes because I am so very lucky to have such an amazing family that have stood by my side thru all the ups and downs of my journey, I know I wouldn’t have made it thru without them.
November 27, 2017 I travelled from Savannah, GA to Maryland. It was a hard morning leaving my brothers place, I shed a lot of tears and many hugs were given and they brought me to the airport and I was wheeled thru the security by a very compassionate man. He helped me with my suitcase and walker and was such a caring soul. He had a heart of gold and went so gently over any bumps and realized how nervous I was and just kept encouraging me with the kindest words. He was exactly the type of person I needed to get me thru the security and the pat down. He wheeled me to the front desk area where I would board the plane. As I sat there tears were streaming down my face because I was extremely sad to leave my brother and family and terrified that I had another major invasive surgery ahead and knowing that I still had many tasks ahead of me once I arrived back in Maryland.
I sat there waiting for the time to pass so our plane would board I was in so much agony I can’t even explain, holding myself up in a seated position was excruciating as my brainstem was being compressed and I didn’t know how I was going to make it thru the flight. I couldn’t even walk anymore I had to resort to getting a steel walker so I could stand up. The disability that this neck instability brings is ten fold when I am in public places with all the lights and sounds everything was just too much. The odd tear would run down and fall onto my phone screen. I tried to just close my eyes but I heard a couple whispering to each other and I opened my eyes and realized they were pointing at me. I could tell they wanted to ask me something but they were on my side and I couldn’t turn my neck. A few minutes passed and the gentleman approached me and asked me where my seat was……. I showed him my ticket and he explained that his wife and him had first class seat tickets and he wanted to switch seats with me because he thought I would be more comfortable. I was surprised and my response was “thank you so much for your kind gesture but I couldn’t take your seat that you had booked”. He then again said I would really like to switch you seats you look like you could use this more than I could….. I thought for a moment and I was so taken back by such a generous and caring offer. This couple really just wanted to help me out so I agreed and of course the water works started up. I thanked him several times for the kindness he had shown to a stranger. I sat next to his wife on the plane and she said she was shocked and that her husband is usually not so nice, she said after 30 years he could still shock her. He had several spine injuries so seeing me resonated with him I found out. They were on their way to a medical clinic as her husband had trouble with his heart and was going to see the best specialist in the country. I shed many tears sitting next to this lady and saying how I am shocked at the kindness and compassion of strangers and that this has renewed my faith that there is still kindness and compassion out in our busy world. I had his ticket stub and sadly I don’t know where it is now because I wanted to search for them when I was able to and send them a thank you, for the kind gesture they had offered to me. It meant so much to me I don’t even have enough words to say thank you doesn’t seem like enough.
My flights went well and I had the most caring people that surrounded me on my travel day. I had to get from the airport wheelchair to a hotel bus so I had my walker and made it to the door of the bus and had several people help me and my walker up the steps and help me get off the bus at the hotel. At the hotel my brother so generously booked and gifted me the night at the Marriott in Baltimore. I walked in and he had called ahead so they were expecting me I don’t think its too hard to spot a girl in a neck brace with a walker as the staff ran up to me and grabbed a wheelchair and got my luggage and helped me to my room. They were so kind and asked about my neck and I told them in two nights I would be having surgery. They knew the hospital I would be at and assured me I was going to be in great hands. I even tried to offer a tip for the service they provided me and both of the attendants said you keep that and we wish you good luck. I locked the door and with my walker hobbled to the bed and just let all of my emotions out from that day. I called my mom and brother crying “people are so nice what did I do to deserve to be treated so nice”. I was so overwhelmed by all the compassion that I had received thru the day. And just as my tears dried up there was a knock on my door….. The entire staff at the hotel gifted me with a cheese and crackers box and they all signed a card wishing me good luck for my surgery. The water works came out again. I couldn’t believe they all took the time to wish me well. Seriously I was so overwhelmed with how much good is out in our world. The news stations are always showing how destructive us humans are and how cruel life is but that is not the case. I received more compassion and care in a day than I ever thought was ever possible. This world we live in has a lot of good in it and it is right in front of our eyes but is often blurred by the news only showing negativity and instilling fear inside of all of us.
(The card the hotel staff signed for me).
My dad flew to Baltimore later that evening to care and be there for me during my second neurosurgery. The next morning November 28th we drove closer to the hospital to stay at the Staybridge Suites. It is where almost all the patients of Dr. Henderson stay. It perfect they have free laundry and provide dinner 3 nights a week and offer tons of stuff with full kitchens in the suites. Its the perfect place to stay when your away from home for a long time. We checked in and I layed down for a few minutes and then I had to go to a nurse practitioner to get approval for surgery. Had I known I would have had my family Dr do a physical before I left Canada. The hospital would not go ahead without the approval so I saw the nurse practitioner and she took my BP and other vital signs, went thru my history etc. She signed off and away we went to the hospital for my next appointment as Dr. Henderson required a ct scan to look thru before surgery the next am. It was a fast appt and I waited for them to copy the images onto a disc that i was to bring to the hospital the next am. After all that was done my dad and I headed back to our hotel and just had a relaxing evening. I packed my suitcase for the hospital as I was told I would be there for three nights.
I spent a sleepless night listening to my meditation music and scrolling thru all my pictures on my phone. I think I fell asleep at around 3:30am and woke up at 4:30am as I had to be at the hospital for 5am. I get really quiet and its like I can’t speak when I get nervous and I think I only said a few words to my dad the whole drive to the hospital……… I have to say the hospital was sooooo organized and the check in process was a breeze compared to some of the hospitals in Canada that I have experienced. So we checked in and sat in the waiting room for about 30 mins and then I was called back and my dad waited in the waiting room. I was taken back changed into this paper gown and the nurse came in and placed compression stockings on my legs and socks and started two IV’s since this was going to be a long surgery they needed to make sure they had a extra access point.
(Shaking and crying just about headed to surgery).
The nurse went and got my dad to come back to sit with me before I would be wheeled to surgery. The anaesthetist came in to go over my history etc and this time I remembered about the tape! I told them paper tape only or I will welt up right away. We talked about my EDS diagnosis and how that would affect my surgery and I explained how nauseated I get after surgery. Dr. Hendersons physician assistant came in and we went over everything and allergies etc again just for a double check. After this Dr. Henderson and Dr. Rosenbaum the other neurosurgeon came in and could see that I was shaking a lot. They grabbed my hand and reassured me I would be ok and said a prayer for me. I started crying and I said I have a bad feeling that my C1-C2 wasn’t right. I can tell you I had this huge knot in my stomach and I begged them to please take a look at my C1-C2 area because I had such a bad feeling that it would be missed. Always trust your gut instincts when something feels wrong it probably is.
I gave my dad a hug and told him I’d see him soon and I was wheeled off to the OR. I remember being wheeled into the OR and looking as much as I could around me, I saw some tools and surgical equipment and I started shaking even more I was so scared and I just thought what if I wake up from this surgery and my neck is still bad. I just spent a lot of my parents retirement savings for this surgery and then they must have given me something because I was out like a light.
THE SURGERY
The surgery was difficult and not what Dr.Henderson was expecting. My previous surgery failed. All the screws that were previously placed in C1-2 and C4-5 were so loose and my C1-2 was very unstable and had a failed fusion.
Dr.Henderson and Dr.Rosenbaum worked so hard removing all the previously placed screws and fixing damage that was done… I even had a spinal fluid leak caused by the first surgery it was large enough that my dura had to be stitched up and special glue had to be applied. He said I had spinal fluid leaking all over and I must have been in terrible excruciating pain. That explains the never ending migraine I had and why I couldn’t stand any sound or light and couldn’t even hold conversations and had to be laying down for most of the day. They said my neck was severely unstable and I had a severe kyphosis that was worse than the imaging had even picked up on.
The surgery was close to five hours long as they worked tirelessly to put screws from C1-7 on both sides and place plates and rods to stabilize my severely unstable and kyphotic neck. The screws that had to be re done were difficult as the previous placed screws were so loose that they rubbed all around and made the holes too large so Dr. Henderson had to mix up some bone cement just to get the screws to stay in place and had to add a extra titanium plate as too much damage was done from the first surgery. My neck is fused from C1-7 and then I have some special tape from C7-T1 that is anchoring to provide further stabilization for my neck.
I woke up from the surgery and I don’t remember much as I was hooked up to a pain pump so all I had to do was push the button and the pain med was delivered thru my IV. I was in a lot of pain and I was not with it. Those that are on my FB were able to read my incoherent post lol! I provided some laughs for some people apparently! I should not have had my phone haha!!
(The next day post Op day 1, just sleeping mostly).
I was on so many medications I remember in the night I was pushing the call button and crying that I was going to be sick and no one was there and I moved my blanket out of the way that I had brought with me and ended up puking all over myself. Remember I just had my whole neck fused and it is in a completely new position and I had my neck brace on so I had no option other than look straight ahead. I remember apologizing to the nurses I felt so bad. They have such a hard job and all the gross jobs they have to encounter each day. I am grateful for them and the hard selfless work they do, they don’t get enough credit.
Days go by and I ended up having to stay in the hospital for five nights post op as the surgery was a lot more involved than originally planned. On day 3 my catheter was removed and I wasn’t too pleased because now I had to get up and use the washroom. I was also switched from the pain pump to oral medication and it just wasn’t enough. I would lay in bed crying I was in so much pain. I remember on day 4 Dr. Henderson came to see me and told me I had excellent gut instincts as my C1-2 was severely unstable. He removed the drain that was in my neck that was draining all the spinal fluid and surgery fluid. He removed my drain and helped me go for a short walk. I do not remember this I only know this is the first picture of me sitting so straight and look at my neck its never been this straight before. My brace went back on after this walk.
(This is my new incision Dr. Henderson cleaned up my old scar that was hideous and did such a great job and this is the drain that was in draining all the fluid in the surgical area).
(This is post op day 4 after my drain was removed and I went for a short walk with Dr. H)
The hospital stay itself was fine. It is all private rooms so I had my own room which was nice as I was able to get a lot of rest. The only problem is I was having severe hallucinations and it was the scariest time of my life. I thought someone was in my room and they were trying to hurt me. I remember bits and pieces and look back at my phone history and I was calling people scared out of my mind. This is why I don’t take many pain medications because I always have bad reactions to a lot of them. When your in a dark room that your not familiar with and this is happening it is so real and I think my brain has blocked a lot of stuff out to protect me. I am fine with that because the few pieces I do remember are absolutely terrifying, you cannot even imagine.
December 4th I was released from the hospital and the nurse gave me some pain meds thru my IV before he removed it. My dad came and picked me up and we stopped at the pharmacy and got my post op pain meds. I was doing ok until we got back to the hotel and a couple hours later I was in excruciating pain. The pain was so severe I just layed on the bed crying and moaning in agony. I was given extended release morphine and the dose was low and I also found out that having EDS my body metabolizes medications in half the time as a average person does so by the time it was time for my next dose it had run out hours before I was scheduled for the next one. I have a video of what it was like it makes me cringe because I never want to feel that ever again. The pain I experienced I can’t even explain the extent of it I couldn’t do anything but moan and stare at the wall. My head felt like it was on a broomstick and I couldn’t move at all. My poor dad to watch your child and not be able to do anything to help 😦 this surgery is so hard on the family members that have to watch and care for their loved ones.
(My dad was so awesome he even helped me blow dry my hair for me. I’m still smiling even tho this was excruciating for me to do I wanted fresh clean hair!)
My sacrum and SI joints kept subluxing and my dad kept my heat pack constantly heated for me and took such loving care of me. Also both my shoulders and clavicles kept subluxing it was so awful everything was so sore. I got some KT tape eventually and taped up my shoulders and my SI jts. I literally had no position I could sit or lay in that I wasn’t in absolute agony, turn this way then that shoulder joint would sublux turn to the other side same thing. My dad took I think 7 pillows and made me a upright way to lay down that took the pressure off my shoulders but then my SI jts would sublux then spasm and I couldn’t even get up or walk. Anytime I would manage to get up both clavicles would pop and then my shoulders were next. I was like cracking and popping with any movement I made. Oh EDS you are so cruel! My connective tissue is faulty and it causes all my joints in my body to be very loose. My muscles work over time trying to hold my joints in place as my ligaments and tendons are made of faulty tissue. My joints move in and out of place several times throughout a day. I guess before I knew I had EDS I thought it was normal and all my life I would just put my joints back into place when they would pop out. I remember when I was 5 years old my SI joints would always sublux and I would roll around trying to get the back in place, I always remember having severe pain but you get used to it I suppose. I believe thats where us EDS folks get our high pain tolerance from! How I walked around for almost 7 months with a severe spinal fluid leak and only took the occasional pain med and suffered thru smiling away trying to pretend everything was ok.
December 7th I had my follow up with Dr. Henderson in his office. He is such a organized, compassionate soul. I walked in and right away he handed me my operative report without me even having to ask. Such night and day compared to my first surgery. I told him that I was in such agony and right away he said EDS folks are fast metabolizers of meds and my pain med was running out before the next dose so he explained I could take the med more frequently and hopefully my pain would get under control.
He was very honest with me and told me I will be in pain for the rest of my life unless I change my posture and stop hunching forward. He showed me how I should be sitting and standing. Perfect princess posture he called it. I told him I needed a thoracic brace because my T spine needed some support. He said if it would help I could try one. Remember my ligaments and tendons are faulty so I don’t have the muscle strength built up to stand up straight. That’s what physio and doing gentle home exercises will be about to strengthen my back muscles and core in a gentle and safe way. He explained that my surgery had been difficult and a lot more involved than originally planned as my neck was severely unstable. He also explained to me that I cannot move my neck or do any range of motion and when I need to turn etc I need to use my whole body as if my neck couldn’t move. He said this because my neck is so unstable that any range of motion could create even more instability thru my neck like my skull to my neck. I will have to wear my hard rigid brace for the rest of my life in a vehicle in case I was in a accident or at night when I am sleeping as if I startle I could move my neck and jar it and the screws are within millimetres next to my vertebral arteries. Lots os scary stuff could happen if I am not careful. He also took a look at my arms and face and gave me some information sheets on Mast Cell Activation Syndrome and that I had signs of it on me. He gave me a sheet with foods listed and that I should stick to a low histamine diet.
(This was my neck when I left the hospital, the week I got home and 9 weeks post op, I am so so happy with Dr. Hendersons skills my scar is so much better now).
Dr. Henderson is the most caring, compassionate neurosurgeon and person that I have ever encountered. This man has devoted his life to helping those with EDS and severe spinal instabilities. He is so full of knowledge and is always learning new information, he goes to conferences and is the WORLDS BEST neurosurgeon for patients that have EDS and upper cervical instability. Dr. Henderson literally saved my life. He is my hero and I will always be very grateful to him. He has many videos on youtube and he is the only neurosurgeon who I would trust and refer others to. I wish he was in Canada or that the Canadian neurosurgeons would want to train with him to gain some of his knowledge that he holds.
My dad stayed with me and took excellent care of me I am so grateful that he could be there with me. I think December 9th my mom flew out to relieve my dad. It was a very stressful and heart wrenching time to witness for any family etc that is there with a person after a huge neurosurgery. My brother even drove up the 10 hour one way drive to come and visit me and help with my care. It was many days of me just in bed crying and to be honest I don’t really remember much as the days just clattered together. He brought me some pictures the kids made me and I put them on the night stand and those pictures helped me get thru some tough days. We stayed in Maryland until December 16th when my brother drove my mom and I back to the Baltimore airport but the day we left it was a blizzard out literally!! My brother got stuck at the airport hotel because the roads were not drivable. Our flight left late as the entire flight crew was late because of the roads and my mom and I ended up missing our connection so we were stuck in Minneapolis overnight until the next flight 24 hrs later. It was a long journey home and I don’t even know how I did it. I just kept saying you’ll get to see your doggy Roxette so I just kept thinking of her and we made it home about 1am on Dec 18th. It took me a good week before I could even get my thoughts together. It was so nice being in my own bed. Thats one thing about being away is that feeling of walking thru your own door and crawling into your very own bed.
(This is what my new neck looks like! Its a lot of titanium but Dr. Henderson has my neck stabilized after almost 4 years of my neck vertebrae sliding all around it is solid now!).
I will end this blog here and do another 4 month post op update, as this is already a very long read. If you managed to read this far I sincerely thank you for continuing sharing in my journey with me. I want to get the word out there because spinal instability and connective tissue disorders are common, the problem is they are so under diagnosed there are hundreds of thousands of people suffering as there are not enough trained professionals to recognize the signs and symptoms of these issues. I encourage every health care professional out there to look for signs of connective tissue disorders or spinal instabilities and believe people when they tell you their symptoms. Trust me no one could make this stuff up, it is absolutely debilitating and we need more eyes out there that can help be made aware. In the span of 7 months me and my family have spent over $130 000 to get my neck stabalized. How could any person truly believe that a person would wish themselves to live in poverty to get a stabilized neck. I have been denied coverage and BC health has refused to help cover any costs for my surgeries. If it wasn’t for my family I would literally be living in the streets. No one has any idea what its like having a life threatening injury and being denied help and having to sell every single asset and go to another country to have life saving surgery until it strikes them or a family member. Count your lucky stars if you will never have to experience this. My initial neck injury could have been avoided if health care practitioners of all kinds were taught better assessment skills and signs to look for. EDS’rs bodies are fragile and we need to be handled with care and cannot be treated like the average persons. Something to keep in mind when doing initial assessments of a person especially when they are super flexible or “double jointed”. There are many “zebras” out there maybe we aren’t so rare as people think!
I will write a new blog post soon. I am dealing with further health issues at the present time specifically Dysauotonomia (my autonomic nervous system is not functioning, basically its the automatic system in your body that controls breathing, heart rate, temperature regulation etc). More specifically Hyperadrenergic postural orthostatic tachycardia syndrome. It is complex and my BP was around 180/113 and HR 120-145 so I am on some medication and waiting to see the only specialist in Western Canada that understands this.
It is very debilitating and any movement leaves me out of breath and unsteady on my feet, most days I can’t even get out of bed. I ended up going to the ER on March 1st because my body felt like it was shutting down…. I had a ct scan of my aorta because with EDS its common to have some problems with the heart and vessels etc which the scan showed I had a type A dissection and I was rushed by ambulance lights and sirens to a larger hospital that deals with heart surgeries. Luckily the heart surgeon opted to do a second scan and it was thank goodness NOT a aortic dissection. My life flashed before my eyes. I will also be seeing a Geneticist next month. It’s been an extremely exhausting month with me needing a lot of care. My family has been so amazing and have been full time care givers to me. I am very debilitated right now and this has been a trying time of my life or make that a trying 4 years of my life. I am trying to stay positive but some days I’ll admit it’s hard to be positive but I will keep fighting for a better life to come. I appreciate all my friends and family and for sticking around when the times get tough. I care about each of you and I still appreciate knowing what you are up to and what’s going on in your life. I may not be able to join in on activities but I am still just me, just in a different new way, plus hearing about whats going on in your life is also a welcomed distraction from what’s going on in mine! 🙂
I know everyone has been waiting for a update I was just needing some time to process everything. I made it safe and sound to Washington, DC but by the time I arrived I was physically completely done. I was in desperate need to lay down. Any travelling is rough on me and you don’t really think about the little things like being in a wheelchair being pushed to my gate all the bumps and even just the lights and loudness is very taxing when your body is hyper sensitive to any external stimuli, but I made it!!! My brother and niece were at the baggage claim to claim me. We drove to the hotel and none of us got much sleep. I was wide awake in a painsomnia.
The next morning we went to my upright mri. It was like night and day compared to any other imaging place I had ever been to. I walked in and they got me right in no waiting! I am so excited because this is also the first upright mri that I had that they didn’t use the stabilization bars for the head or chin!!! Finally a upright mri centre using the technology properly and to the full extent of the technology!! My neck was imaged in true gravity, I was so happy and relieved to finally see this!! This is rarely done. The technologist was so awesome that he re did my flexion images 3 times just to make sure that he got the absolute best pictures possible! They also gave me a cd with the images on it before I left. There really is no comparison to any other mri I have had, this was hands down the best! We had a few hours after the mri so we went back to the hotel as we had a late check out and I was able to lay down and have a rest before my appointment with Dr.Henderson.
My appointment went really well. There was a bit of a wait but so worth it as I have finally found a highly skilled, very thorough, organized, compassionate neurosurgeon. He walked into the room and my imaging was up on a big screen. He immediately said isn’t it VERY obvious what your problem is. He explained that my neck is unstable and my neck is stuck in a kyphotic curve when it should be in the shape of a c or lordosis. I have many instabilities throughout my neck, no wonder why I have been in excruciating pain and not able to be upright for very long, and why my legs and arms are not working properly.
I’ll post some pictures of my mri. My previous fusions that I had you will not see the hardware as they do not show up on mri.
This is sitting neutral with gravity. You can see the many instabilities throughout my neck (look up a healthy looking normal mri and compare to this) and notice my neck is curved forward it should be the exact opposite as this. This is NOT a normal mri. It really is shameful that BC neurosurgeons and radiologists can even say this is normal, and me being offered zero help, this has to change. I will not be gaslighted anymore, this insanity has to stop. How many others do I meet daily being told “oh that is normal.
This is me in flexion, again this is very obviously not a normal looking mri.
This is me in extension, again not normal and not stable.
Those are a few of my mri pics. I just cannot believe I am being denied help in BC when there is clearly a very big problem. I am providing all the info again as I want to help others when something doesn’t feel right, your gut never lies. Keep fighting and never give up, there are always answers even if it takes a journey to understand.
I am so grateful for these last 5 months I have been researching and speaking with many people and following many neck surgery groups on FB some of them more than 5000 members. A lot of information is shared and many others suffering like me I have met and they have provided so much information to me. I know dozens of other Canadians and others from around the world suffering and I hope my journey can help them get them to the right and proper care they dearly deserve.
Ok back to my appointment! Dr.Henderson and his colleague Dr. Rosenbaum both came in the room and were discussing my mri and were doing measurements and looking thoroughly thru it. They diagnosed me with cervical myeloradiculopathy and multiple areas of instability. He then asked me who diagnosed me with EDS (Ehlers Danlos syndrome) type 3 hypermobility…. I said no one I’ve asked about this as I have had suspicions over the last 2 years and was always told no without even any testing etc. Dr. Henderson did a thorough physical and neurological exam and recognized right away yes I do have EDS. It explains a lot going back to when I was a child and my SI (sacroiliac) joints always seemed to bother me and I could feel it sublux. I always remember being in pain in my joints and having severe digestive issues since I was a child. My joint pain was so bad that I would literally crawl around my house as I was unable to walk at times, the doctor always blamed it on me running long distance too much or maybe I was trying to get out of school, or maybe it was just growing pains!! I was a very sick child I was always at the doctor with so many throat infections, joint pain, etc. I was also super flexible and way too hypermobile I still am. I’ll post some links of explanations of EDS. EDS type 3 has no genetic test so it is based on clinical exam and history.
We then discussed what is needed to happen to get me back to a functional level of living. My C0-1 was thoroughly measured and looked at and that was determined that this area is ok. My brother was with me and we were in with both the surgeons for over an hour and my brother was very pleased with how much they were able to do and how thorough they were. I will be having surgery on Wednesday November 29th at The Doctors Community Hospital in Lanham, Maryland with Dr. Henderson. I will be having a posterior cervical fusion and stabilization after reduction at C2-C7 and then a special fusion taping from C7-T1 to add extra stabilization for my neck. Basically what this means is I will be having my previous neck incision opened and have my neck tractioned and put into extension to reverse the curve in my neck to a more lordotic curve. I will have 2 screws placed in each vertebrae from C2-7 and then 2 long titanium rods placed on either side all the way down my neck. Then I will have C7-T1 fused with fusion tape. I will then be in hospital for 3 days post op, and for the next 7-10 days after this I will stay at a hotel with my dad and then be able to fly home. I will be very limited on what I can do for the next months returning home. I will also be adjusting to life with a completely fused neck. We humans are amazing at being able to adapt, and I would choose stability over mobility any day.
Right now I am currently at my brother and sister in laws house in Georgia. We drove from Washington, DC to here which is about a 10 hour drive on Tuesday November 21st. I have been enjoying time with my nieces and nephew and brother and sister in law. These kids sure have a way of making me feel good. I have been mostly laying down in bed but they come in and keep me entertained, there is never a dull moment here. They have all been spoiling me and waiting on me and making sure I am well taken care of. We have played old woman/man as they use my cane and walker and pretend to be a grandma or grandpa with bad backs. I have taken pictures and video I figure it will be good ammo for their future weddings one day!! 🙂 They have me laughing so much, and laughter is truly the best medicine. These kids are my joy! I will fly back to Washington on Monday November 27th and my dad is going to be flying to meet me and take care of me through this surgery and post op period. I am so grateful to have such a wonderful family that has supported me through this.
On Tuesday November 28th I have to go for a ct scan with the dye and then on Wednesday November 29th I am to be at the hospital for 5:30am and my surgery is at 7:30am. At the moment I am not feeling too anxious. I have been researching many surgeons and when I researched Dr. Henderson my gut told me this is the one. The groups that I am in have all very highly raved about Dr.Henderson and I have spent many months of gathering information, I have 100% more information now than I did a year ago.
I won’t be updating this blog after my surgery until I return home. I know how I felt after my last surgery and I don’t think I will have the energy to be on my computer until a later date. This will be another huge surgery that I will undergo, but it is a surgery that will stabilize my entire c spine. I appreciate all your healing thoughts and wishes. The surgeons are confident I will be back to a functional level of living and be rid of these awful neurological symptoms etc. I am going into this surgery with a light at the end of the dark tunnel of constant excruciating pain and symptoms with hope for a better future. What have I learned through all of this? Trust in yourself if something feels wrong in your body don’t accept the first answer that there is nothing wrong, your gut never lies. Keep on pursuing until you find the right answer, we are not taught to take charge of our own health and often leave it in the hands of others to figure it out for us. No one is perfect and mistakes are made, but it is not okay that we are made to believe that there is nothing wrong when there really is. We must be our own advocates and not accept denial or be told it is psychosomatic, keep fighting until you get the truth! Our bodies are smarter than we get credit for, where there is a will there is always a way!
My Love to all of you who have continually stayed beside me and supported me in many ways thru this journey! 🙂
******(I just wanted to add a note that it is so important to find EDS neurosurgeons that understand our unique EDS needs. My first surgery was a failure and I am forever grateful for finding Dr. Henderson. He literally saved my life. There are a handful of surgeons out there that work in hospitals that are very qualified to do these surgeries, please visit my post on Craniocervical Instability & Knowledgable surgeons. Take it from me and my experience you don’t want to mess around with anyone but these true experts for this type of neck surgery. Any surgeon not doing these surgeries in a hospital should raise major RED FLAGS.)******
Dr. Henderson in my opinion is the very best in the world, compassionate, caring, always does follow ups so your not stuck if things come up after surgery, very professional and provides all documentation of visits and operative reports, very organized office and staff are very nice and caring!! 🙂
This is a updated DMX September 2017 5 months post op, which shows my neck is still not stable and the level between the fusion is slipping. It turns out these screws were too long and there was nothing holding them in place they became loose and these screws did not fuse, it was a failed fusion. This is why the dynamic imaging is so important if I was laying down static not moving none of this would be apparent. DMX is a very essential component to understanding necks in real time with gravity how we live our lives, not laying down without gravity.
I don’t even know where to start with this update. It’s really, really hard for me to write this post. I was close to just wanting to delete this whole blog. I know I can’t because I know how it’s allowed me to connect with so many others suffering like me. I don’t have good news to share. To be perfectly honest I have been putting on a brave face and smiling and pushing myself thru pain that I cannot even describe for a long time. For awhile I thought it was just part of the healing process, as you take 1 step forward and 10 back. Its definitely not and something is seriously not right with my neck. I am at a 15/10 on the pain scale daily and this is not normal for me. I have a huge pain tolerance and this is excruciating and so very exhausting. I am also having severe insomnia, I am not able to sleep much maybe 2-3 hrs a day and thats even taking gravol to knock me out, and I am on some morphine and that is barely touching my pain. I still wake up as soon as I turn in bed and my pillow is literally soaked in tears.
I have been feeling like something is being missed as my symptoms have been progressively getting worse and worse every week. I was doing less and less and the severe pain levels that I have been experiencing…. something is just not right. I am having difficulty holding my head up even in my rigid neck brace. I am so thankful for Dr. Blaskovich at The Whiplash and Injury Clinic. He has an incredible amount of knowledge about the neck. I sent him a message about how I was feeling and what I was experiencing and he agreed I should get another DMX (Digital motion x-ray).
I had the DMX done at the end of September and it is showing further instability throughout my neck. The fusions that were done are holding well and doing what they should be doing, the problem is that I have a really bad neck. I knew I would need further surgery, I just didn’t expect it to be so soon. I will also say that I did raise concerns on some areas that are unstable now prior to my surgery but was told that wasn’t a issue, clearly it was and is. I am not angry I am just so upset that I have spent all my money that I could possibly get a hold of with such high hopes of having a functional level to live my life returned to me, its like the carrots were dangled in front of me for a couple months and then as soon as I could grab a hold they vanished.
I struggle to get myself out of bed and most of the time I honestly don’t have the strength so I just give up and stay in bed. A few weeks back I completely blacked out from being upright for too long and when I came to I couldn’t speak, my speech was all garbled and it felt like I had half a body, my whole right side of my head and neck, face and arm and leg was completely numb and my face was drooped down on the right, after about a hour it started improving but I have been worse since then. I am pretty sure it was a tia but this was the most intense one I have had. My mom witnessed it and was sure I was having a stroke, it was really scary. I did see my family dr early the next am and was given some pain medication and told to get back to the states right away for care, as she tried talking to some neurosurgeons in Victoria but they couldn’t offer me any help. She is awesome and really does care but like she says she has never seen someone like me with my neck and can’t offer me anything as she doesn’t have the knowledge. At least she is honest and that means a lot to me.
I can’t even walk my dog anymore, that was the one main joy in my life was taking her out and walking amongst the trees and the ocean. I have an amazing family and they literally have to do everything for me all over again. Everyday I want to give up because I can’t believe I am in this situation again. I am so grateful for so many things and I really do try to stay positive and find happiness in the smallest things, like a cup of tea and my cozy bed, but to be honest this year has been the worst year of my life and it’s been so much to process. There has been several times this year that I have wanted to give up and throw the towel in. Physically and emotionally I am just done. I am more than done I am over done. I don’t ever show this and I put on my smile but as soon as no one is around I just cry, my body is so tired. Every night I go to bed praying that I won’t wake up paralyzed. I am in desperate need of help. I have some friends that I have met thru my neck surgery group and I found a neurosurgeon that has helped many people like me. His name is Dr. Henderson and I called his office in tears begging for a appointment because he is so amazing it can take many months up to a year to get into him. I am so grateful to his office they are getting me in to see him on November 20th. I am flying by myself to Dulles, Washington (the airports have amazing wheelchair service so they will help me get on the planes) and my brother and niece will pick me up from the airport and take me to my upright mri and my appointment with Dr. Henderson in Maryland. This is an almost 9 hr drive for them to come and get me 1 way and I am so grateful to have such a loving and caring family. My parents are staying home to take care of my dog Roxette. I don’t know what I would be doing without all of them. I have tears running down my face right now, they have the biggest hearts and are so caring, I wonder sometimes what did I do to deserve such an amazing family. I wish I could do something for them and repay them for all the caring and kindness they have given to me. That goes for all my friends out there too I wish I could do something for all of you. Know that I think of all of you often and send out gentle hugs to you.
I know so many people will have so many questions so I will try to answer some now because I cannot return too many messages at this point. I am literally getting thru each day hour by hour at times. I will also update after my appointment on November 20th. I know the first questions everyone will say is I thought the surgery with Dr.Franck was suppose to “cure” you. Firstly there is no surgery that is 100% guaranteed. The damage to my neck is a lot more extensive than what was anticipated.
Why am I not returning to see the original surgeon? I am not because I am finding lack of professionalism, stopped communication, and lack of follow up. I am not getting the answers that I have been asking. I am literally in need of urgent help and this is not seemingly going to be provided for me. Dr. Franck was the best surgeon to help me out and the only one that would help me out to the best of my knowledge at the time. I have since found a more knowledgeable and organized neurosurgery clinic that I feel will be able to help me out and provide me answers to all the questions I have about my declining health.
There have been more neurosurgeons asked locally in the last month to take a look at me but they will only go by the imaging that is within this healthcare system (plain static x-rays and recumbent mri) that show my neck without gravity and not in motion which is where you see the true damage and what’s really going on in my neck, so they dismiss me without even laying eyes on me. So many people question why I don’t get help here trust me I have been trying for 3 long years. To my knowledge the medical system in Canada is so far behind in understanding spinal injuries mainly neck injuries. There are thousands of others like me out there suffering and have seen dozens upon dozens of specialists here in Canada all over every province and you go to the appointment and are dismissed because of the lack of knowledge in imaging such as the DMX and upright mri. This is so wrong, how does it make sense imaging a persons neck laying down??? We do not spend our days laying down all day and night, normally. The imaging they are providing to us is not proper and the specialists are not even looking at the proper imaging that is provided to them. They won’t look at my DMX imaging when it would take next to no time and the instabilities are clearly visible. No one will truly understand this until they themselves or a family member is suffering. Then you’ll be thru the system and realize the insanity of the whole nightmare in lack of proper imaging and specialists. I will also say that to the best of my knowledge most people are focused on the back and not the neck. This is so frustrating until one feels the injury in a neck and how the brain is affected it’s literally incapacitating. I am not minimizing backs at all but this is what most specialize in. You have no idea just how much you use your neck every second of every day. Anytime I try and move my neck my vision goes blurry and I feel so dizzy and there is lack of flow to my brain. I wish more people were interested in the neck its more vital than a person really realizes.
I feel the need to explain this because so many people I know mean well but telling me they had someone in Canada fix their neck is not helpful to me because I have exhausted the medical system and gone as far as I am able to go to get help here, with my exact neck injuries. The problem I have with my neck is not as common knowledge to most surgeons in Canada, I do hope and I know that one day this will be common knowledge and no one else will have to suffer and fight for care that should be available here. Also think if a surgeon has not worked on a neck like mine how would I trust them with a huge major surgery on the spine, irreversible surgery at that. Every single person is unique and no injury is the same as another. It’s so easy for people to judge and give advice and I know most people mean well but I am not asking for advice and I don’t even expect a lot of people to understand this, as this is something like most things us humans cannot understand until we personally go thru something ourselves or a family member does, they see the suffering daily and all the struggles that is when the light bulb goes off and we are like ohhhh now we get it type of thing. If you have a question by all means please ask me I will try to answer to the best that I can. The worst thing is when people assume or have the wrong information they share because the correct information is essential for there to be hope for the future of others that will, sadly go down this path. Proper communication is essential.
Since my surgery I was able to find some groups that have many members going thru the same problems as I am, and a lot of them are actually from Europe that travel to see the best neck surgeons in the USA. Even in Europe there are very few specialists that understand this injury. I have more knowledge now than I did even 4 months ago. Its been nice to connect with others as we are able to give each other tips on what has worked for us. For example I have a new neck brace the one I had was just not working for me so after asking the group I was told options and I have the Miami J neck brace and it makes a huge difference to feel more supported when I am having to be upright.
I am flying to Washington on Nov 19th and Nov 20th I have my upright mri with flexion and extension views and my appointment with Dr.Henderson. I am really nervous about flying because I have been blacking out when I am upright and its almost 12 hrs of being upright and that is a scary thing to think about because right now I am in bed almost 23hrs of the day laying flat. I am on some pain medication now and I am hoping it will get me thru the flight. I am needing help and I am fighting with everything I have left in me to get there in 1 piece. I want to get to a functional level of living. I will always have some level of disability for the rest of my life and I have accepted that and I will work around this and I know when my neck is stabilized I will be able to think about my future with hope. It’s not that I don’t have hope now but getting thru 1 day is a challenge for me right now.
This is a picture of my scar taken about 5.5 months post op.
I am not able to enjoy visits with friends at this time because I have such a migraine that never goes away and I am very sensitive to sound and lights and a 1 hour visit takes me days to recover from. I sleep 2-3 hrs a day and that is usually not at night it could be anytime during the day. I am so grateful to all of you that have reached out and have wanted to come over and it is so hard for me to say no I can’t but I am not very good company at the present time and I am really appreciating the stillness and quite. Its the only way that I am coping right now.
It has taken me almost a month to get this written out because I really thought this update was going to be super positive, and I was on the up swing of things. Life is not what you think it should be, or the way you planned it in your head to turn out. I am living each day 1 day at a time. Planning things just does not work for me anymore, there is always too much disappointment, its much easier to go day by day. The hopes that I had were so high its really been a reality check for me. I have not even been able to drive my car yet, I finally took it off insurance for 6 months as it was literally just sitting there. My future is unknown right now, as scary and upsetting as it is I know I will be needing more surgery I am just hoping it’s not going to cost a crazy amount as I am on a very limited income. I am praying it will happen quickly, it would be best if I could be starting my recovery process all over again before the new year begins.
Thanks for being so amazing to me each and every one of you has supported me in so many ways. The healing wishes and encouraging words mean a lot. If you have any funnies feel free to send them to me I am always up for a good laugh, and honestly getting a text or email with a funny is what has allowed me to get thru some days. 🙂 I am lucky to have all of you in my life, I am grateful for all of you and helping me believe that I am stronger than I think.
Now for a funny!! 🙂
My friend Connie sent me these socks for my birthday and when it’s a really bad day I put these on and I really do have a good laugh!! 🙂 Have to find humour in the small things.
🙂
******(I just wanted to add a note that this surgery failed and I was abandoned by this surgeon left very sick and scared with a failed surgery and had to have a revision and second neurosurgery by a EDS knowledgable surgeon. My neck was left in terrible condition after this surgery, I became bed ridden and couldn’t function less than 2 months after this surgery. I am not the only one that this has happened to. Just FYI this type of surgery should be done in a hospital setting and if a surgeon is doing this surgery not in a hospital setting RED FLAGS should be up!!! Getting in a car and driving to a hotel after this type of surgery is absolutely dangerous and insane had I known there were many more options out there of more qualified surgeons I would have never gone this route with this surgeon. If you would like a list of surgeons that deal with upper cervical instability please visit my post on Craniocervical Instability & Knowledgable surgeons. No one else deserves to be treated the way I was. )******
~Sarah's Journey thru Ehlers Danlos Syndrome & Craniocervical Instability~ 