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living with an occipitocervical fusion

patrain17ppatrain17 Ottawa area, CanadaPosts: 106
I am looking to connect with someone or people who've had an occipitocervical fusion. I would like to know more on how to cope and live with the limited neck movement. I would also like to know if it's realistic to return to normal activities and high intensity sports. I need some guidance please.



  • I had my surgery April of 2011 and also an ACDF in November of 2010. I have been trying to find someone or some cyber place that share my background - and hopefully exchange information and experiences. Have you had yours done? I have recovered nicely in many ways but the bone is still not scheduled to have another CT and X-ray this month. Hope to hear from you soon.
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    I'm 10 months out of my last surgery. I had decompression surgery to remove a bone that was putting pressure on my brainstem an upper cervical spine. It was done in two stages. During the first stage, they removed part of the bone and then had an MRI done to see if it was enough to relieve pressure. Unfortunately it wasn't and 3 weeks later I was at it again to remove the rest of the bone and bone cartilage. Following that second stage decompression, they had to fuse because of the unstability the decompression had caused. The decompression parts of my surgeries were done through the nose.

    During the surgeries, my surgeons noticed I had difficulty breathing. I wasn't aware of that problem. All of it was caused by that bone. I just couldn't believe it when they told me about the breathing problems but going back, it explained a lot of things.

    I'm going for a follow up MRI in a few months to make sure everything is OK. On the last X-ray, everything was looking great.

    Today I'm having a though day. I did a bit too much lifting yesterday and since last night I'm having pain in the neck and headaches. Most days I'm feeling good, but some days are thougher.

    All in all, I'm feeling a lot better. Most of the symptoms are gone, but unfortunately not the swallowing problem. Getting used to not being to be able to turn your head normally is hard and driving is a challenge, but it's better than the end result I could've had if I didn't have the surgeries.

    Finally, I hope things get better for you and those bone fuse. I'll be happy to hear from you and exchange on our experiences. It's nice to be able to talk about that with someone and to know that they really understand what your going through.


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  • Hi there,
    I realise these posts are a few years old, but hopefully you see this. I've also been looking for somewhere to connect with other people with occipitocervical fusions.

    I had an accident in July last year (just over 9 months ago) with a severe injury that required an occiptocervical fusion. I just wondered how you've been coping? Pat, you mention driving is a challenge - so you manage it? I find whenever I'm sitting in a car with other people driving, there are just too many places I need to look, but can't turn my head enough. Do you use extra mirrors?

    I just feel there are so many times I need to turn my head more (like sitting next to friends at a table and trying to look at them properly). Something you just take for granted before.

    Also, I feel like I've got a brick in the back of my neck! Do you feel anything like this, and is it likely to go away?

    Hope to hear back from you,

  • Hi there Pat,
    Thanks for replying. Sorry to hear you're getting other problems in your spine. I'm a pretty positive person too, although I would do anything to make this better. At the end of the day I've got to keep remembering that things could be much worse.

    I live in a city, with quite a bit of traffic, but I think it will be a while before I am driving anyway, so will rely on public transport for the time being. Thanks for the advice with mirrors. I think I'll have to invest in one of those reversing cameras too.

    You're right, the other thing that is difficult is sitting next to people at a table and trying to have a conversation with someone next to you. I also end up often sitting at the end as it makes things easier.

    It doesn't make sense dwelling on things you can't control. It's just difficult not thinking about it at the moment, but you're absolutely right. It's just good know that you're not alone.

    Thanks for the reply again and hope things are looking up for you.
  • Hi All

    I am new to this website also. I had the fusion 15 days ago. It was a lot worse than I expected! It took them 3 hours to place my breathing tube in place as my neck and windpipe were not in the correct place etc because of the condition. Early days for me and struggling. It has been so HARD to find information and discussions regarding this particular surgery, I am so happy I have found you. I discovered late last year I had Atlanto-axial sublaxation, probably caused by fused vertebrae at birth but did not know anything about it until I was getting horrendous neck/head aches and I could not function correctly neurologically over a period of months. Took them a long time to get a diagnosis, but finally they did and had no option other than surgery or could be fatal. I am 43 years old and in full time employment, so been very difficult. I was in a hard collar 3 months pre op and I have to remain in one for 6 weeks post op when I will be having scans to check it worked. Any help or information anyone could offer would be fantastic, you feel very much alone with such a rare condition as I am sure you know! Currently patting myself on the back for getting to 15 days as the pain was awful. It is settling down a bit with medication but still sleeping sat up on sofa as too painful to lie down. I am really hoping I can get back to my office job maybe around the 12 weeks mark. Many thanks Diane xxxxxxxxxxxxxxxxxxxxxxx
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  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    edited 05/28/2015 - 4:32 PM
    I will get back to you when I have more time Diane. Welcome to our close circle!

    Just found out from my last MRI report that I am fused down to c4. I always thought it was down to c3. Oh well, one more level to worry about I guess! ;)
  • Hi Pat

    Many thanks! It is indeed a close circle. It is incredibly hard to talk to anyone that has had this done. Very scarey xxxxx
  • Hi Diane,

    I just happened to log in and saw your post. I haven't got a lot to add, but I just wanted to say welcome to the small group. I hope you are recovering, and the pain is subsiding. I will add any information as and when I get any. I did have a recent check up with a doctor who said I would probably have to have more fusions until they'd fused the whole neck. Does that sound right to anyone? That was the first I'd heard of it and he was quite junior so I'm not sure - will ask more at the next appointment in 6 months time.
    Hope things are getting better,

  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    Hi Gareth! I hope things are going well for you. I am a very positive person, but as far as that brick behind your head, I don't think it ever goes away. Even after 3 years I still have that heavy feeling and stiffness bothering me everyday. At least, that's my take on it. Maybe you'll be luckier.

    As far as driving, I live out in the country where there's hardly any traffic. I took me a good 5-6 months before I started driving. Driving in high traffic areas is usually my wife's job. If I have to drive up alone I plan my ride so I don't have to turn my head much unless I am at a light. Mirrors are a must. Especially those small convex one that let you see your blind spot. I even tried a convex rear-view mirror, but that didn't work out well. It was too hard on my eyes. Be patient, with time, you'll get used to driving.

    When at a restaurant or a party table, I always try to sit at one of the end seat. Let's me see everybody without putting unnecessary pressure on my neck. Those situations are still hard today. I always end up with neck and head pain after.

    After 3 years, I finally do more things I used to do. Unfortunately, things are catching up and problems are appearing elsewhere down my spine.

    I try not to dwell on what I can't control and live life as I want to. Life's too short. Keep yourself busy, it helps you forget about some of your limitations and your pain.

    Take care! Don't be afraid to reply. It's nice to know you're not alone although I wish you didn't have to go through this.
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    Me again! I was just reading one of your reply Gareth and you were saying it was hard to forget the pain and limitations of our condition at the stage you were at. Made me realize that even after 3 1/2 years not a minute goes by without me thinking about it. My body doesn't let me forget. Not complaining here, just realizing that you just can not forget about it. :|

    So Gareth! How are you doing? Is driving in the future. I saw one of my neurosurgeon last week (Not the one that did my decompression nor my fusion) and he teased me by asking me and my wife who was now driving. Me and my wife both smiled and he knew the answer.

    As for you Diane how are things improving?

    I love hearing from you guys.
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