1st Cervical Spine Surgery 6 Months Post Op….. :(

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).

www.whiplashclinic.com

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. )******