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living with an occipitocervical fusion

patrain17ppatrain17 Ottawa area, CanadaPosts: 103
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 fused...am scheduled to have another CT and X-ray this month. Hope to hear from you soon.
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    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.


  • 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
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    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: 103
    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: 103
    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.
  • Hope everyone is well. Just wanted to add my experience to the mix as I had an occipitocervical fusion on 2/2/15. I just passed the four month mark last week. My fusion is from a plate on my skull to C2 and C3.

    Prior to this I had an Arnold's Chiari Decompression surgery by the same surgeon on 8/20/13. I recovered pretty much 100% from that surgery and was back to lifting weights and started mountain biking prior to the symptoms of the C1 leaning back in to the brain stem starting. I will say that this surgery took me six months to get over the nausea that, as I was told, was due to the surgeon operating so close to the nerves in the back inside of the skull where the nausea nerves are. Some was due to generalized stress, but I feel it was mostly just a healing thing and it would take six months like they said. For someone who was used to lifting weights 4-5 times a week and going to lifting 0 days a week...there was some anxiety of what to do with myself when I needed an escape from the situations we have in every day life.

    As far as my last surgery, I have been having trouble with my neck muscles getting tight and trouble swallowing for a little while since surgery. I assume once everything calms down and the muscles grow back and get used to the movements, this will subside. I have also been told that some of the trouble swallowing for me and the neck muscles getting tight in the front of the neck were part of anxiety...which I have had some anxiety my whole life. I went back to work two weeks from the date of surgery (office job), but after three or so weeks, it became too stressful and I took two more weeks off. I was not in a collar after surgery. My advice to anyone is to take plenty of time prior to returning to work but stay busy with something you enjoy doing at home...reading, etc. If I had it to do over again, I would probably stay out longer, however, my doctor said to return when I felt comfortable.

    I'll post a little more later, as I can get to talking too much. One thing I would like to see in the future is a resource group or organization that can provide a little more post op information for these surgeries (I know it would be difficult since every person/situation is different)....if there is anything out there, please let me know. It gets to be a little concerning working through this without a guide of what to expect. Guess that's why we wound up here.

    Oh, and they went in through the back of my neck both times...the fusion maybe 1-2 inches more of an incision.

  • Hi there,

    Just thought I'd say welcome too. It's good to have people together even though we are a small group. Have you found any alternatives to lifting weights and mountain biking or is it something you're going to look at getting back into?

    Just replying to your earlier message Pat, I had a goal setting meeting at my rehab place this week, one of which was returning to driving, so yes, it should be coming up in the not too distant future. I've found out you can order reversing cameras which don't seem too hard to fit, as that will be very helpful, and ordering/fitting convex mirrors doesn't seem to be a problem.

    I also find myself thinking about my physical state 99% of the time. I have lots of injuries and am focusing on walking again, so that at least gives me some distraction, but I think most of all about the neck issue which isn't really going to get any better. Anyway it's good to know you can get around things and again, like you say best to keep yourself busy rather than think things over.

    Hope things are going well with you guys.
  • Accidentally posted the same thing twice, as it didn't look like it had saved my first one, so have just updated this second one!
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    Welcome to the gang! I agree with you that it would be nice to know more before the surgeries. I also found this site after. One of my surgeons had told me that what I was going to have was life changing, but you can never be fully prepared. I had decompression surgery for a condition called basilar invagination followed 3 weeks later by an occiput to c4 fusion. I don't think anything could've prepared me for what was coming. The scar is just a reminder of how tough and willful I am.
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    I'm sure glad to see that you're going do do something about the driving Gareth. Yes, I would love to have one of those cameras but I'm pretty good at using my mirrors to back up. In all honesty though, I've bumped in a few cars since then but with no damage. Next car I'm getting (in 1 or 2 years) will have the backup camera and the blind spot detector. The convex mirrors are also very useful. Taking action to get back to life as much as it was before is good for us all.

    Take care!
  • Thank you for the welcomes. I'm about 20 weeks post-op now. Still having the good and bad days but have had a few good days lately that reminded me of what I used to feel like prior to all of the surgeries...those are very encouraging.

    Gareth, I have not found much alternative to weight lifting or mountain biking, yet. I may try road bicycling in a few months. For the past couple of weeks, I have not gone to the physical therapist for the soft tissue massage as much as I had been because I didn't feel that I needed it. I have mainly just been working and trying to do some light things around the yard...try not to do anything too jarring or stomp around (lol) as I can feel the fusion. This week I did 5 pushups on Monday and Tuesday evening along with 10 squats and a couple lunges...I'm feeling the push-ups in my neck seeing as how I have not done anything like that in close to 7-8 months. My PT said I could do push-ups probably two months ago, but I waited as I am nervous about exercising. My physical therapist also told me yesterday that he didn't remember my neck being that thick and that there was some puffiness around the back of my neck (where the incision site is)...I guess where the muscles had tension put on them while doing the push-ups. With that said, if I do get back into lifting weights, I will have to change the way I lift for a while and not be concerned with lifting heavy weights...just lift for overall wellness.

    I think after this bout with the push-ups, I may just stick with lower body exercises and nothing strenuous and just take more time....maybe a month or so before I get back to doing them. I'm nervous doing exercises given the symptoms that triggered me going to the doctor for both the chiari and fusion became more bothersome with exercise. It's taken longer for me to get back to working out this time than when I had the chiari decompression surgery, however, I have to remember that they are two different surgeries...and it's not meant for me to work out like that at this point.

    Other than that and just general stress from work, things have been going well. A coworker told me the other day it looked like I was moving my neck more so that is a good thing.

    I did have an x-ray about a month ago and sent it to my doctor for review. The fusion is looking well and he said I could do any activity I wanted to (I mainly asked about a deep tissue massage due to good reviews of a local masseuse and how their back, shoulder, etc. was better after a couple of visits.). I did mention that I had some trouble swallowing and my nurse (whom I was e-mailing) said that the trouble swallowing could be persistent up to 6 months and that as long as it wasn't getting worse and I was making some progress.

    That's about the most that has been going on with me lately. I'll try to keep you posted as things go.
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    Hey KTMGuy! Glad to see things are progressing, but please don't do any upper body weight lifting. I don't think it's a good idea for any of us. Push-ups are fine but I didn't start doing them until a year after my surgeries. Never done more than 25 since because I find it too strenuous on my neck. I used to do shoulder flys before my surgeries and would always get shocks when I lifted my arms. Tried some about a year after with very light weight and after a few of them, I had to stop because I was starting to get the shocks again.

    A question to all of you guys. I have a big lump at the bottom of my neck incision. It is more prominent on one side of the cut than the other. I've had it for as long as I can remember after my surgeries. Any of you have the same thing?

    Catch up later! Take care!
  • KTMGuyKKTMGuy Posts: 5
    edited 06/30/2015 - 3:58 AM
    I do not have a lump on the base of my incision site. The only thing I feel is my spine there...however it seems that it can be more prominent when I bend my head downwards. I think this is normal as I have always (as much as I can remember) had that there.

    Is your lump a hard, bone, lump or is it like a lump where some of the skin healed together after the surgery?
  • Diane,

    How is the recovery going?
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    Is your lump a hard, bone, lump or is it like a lump where some of the skin healed together after the surgery?

    To answer your question KTM, the lump seems to be tissue related. Like I said, it's more prominent on the right side of the incision. You can easily see it. :( But it's only esthetic so I shouldn't complain.

  • CylynCCylyn Posts: 1
    edited 08/20/2015 - 9:10 PM
    Hello, New to the group. I am so thankful to have found this site. Hours of searching net has produced virtually no info. on what I can expect after surgery. Hopefully one of you out there can tell me your experience. CT scan shows c1 migration resulting in pressure on brain stem as a result of Rheumatoid Arthritis. Also issues down to C6-7. Surgeon is suggesting decompression followed by occipital plate, with rods down to C7. My main question involves head mobility . Will I be able to move my head in any direction after surgery? Also, should I be concerned about the really loud "pop" with certain neck movements? Thanks.

    Welcome to Spine-Health
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    ~ spine-health moderator, savage
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    I will find time this w-e to try to answer a few of your questions and reassure you I hope! Take care!
  • Hi

    i am 39 year old with congenital fusion of c1 to skull and instability at c1 or skull to c2. I have known it for 7 years now, but postponed the surgery. I just have symptoms like getting tired if standing for more than 30 minutes for the last 6 years.
    Now the doctors keep telling me that I will die if in an accident. I just keep thinking if God has kept me alive for so long then why have the surgery. i have an appointment on Nov 4 with neurosurgeon. I am worried about the surgery and also losing my job as sole breadwinner if don't get back in 12 weeks. How long does it take to recover after surgery.

    This disease is rare and its hard to find a person. i am glad to find you guys.
  • SavageSavage United StatesPosts: 5,427
    Welcome to Spine-Health
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  • Hi,
    Thanks for sharing ! My best friend will have an OCF this morning... In 3.5 hours!
    It is not easy to find informations about risks, complications and what is the life after that kind of surgery. Indeed, it is my way to help her and be prepared to help and answer her questions.
    Could you give me some advices ? How I can help? Support? What she will need?
  • SavageSavage United StatesPosts: 5,427
    Welcome to Spine-Health
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    Spine-Health Moderator
    Please read my medical history at: Medical History

  • SavageSavage United StatesPosts: 5,427
    You may find it helpful using the search on this site, upper right on page.
    Type in your concerns and you may be led to current or past posts, articles and or videos.
    Very much information!

    You also may want to search for the posting of, "Post op must haves".
    Great ideas to help one prepare for recovery after surgery!
    Spine-Health Moderator
    Please read my medical history at: Medical History

  • A cheery hello from New Zealand.

    I am a 53yr old female and I have known since I was 11 (since landing badly after a backflip) that I have a few anomolies in my cervical spine including the absence of an odontoid process. Aside from wearing a hard collar for two years following my accident, life and function has been as normal as the next person. Two cases of whiplash, took longer to recover from and initiated multiple xrays each time, but otherwise all was good, up until about 18months ago, when I started to get neuralgia pain on my right occiput and my right ear. MRI showed a myelomalacia or softening of the spinal cord, at the level of C1. Subsequent SPECT or Bone density scan showed the anomolies that I was already aware of but, highlighted the uptake of radiation in areas of the cervical spine. Blah blah blah ... long story short ... it has been deemed that the best plan of action to preserve my spinal cord, was an Occipito Cervical Spine fusion. Plate screwed to the base of my skull with screws to C2 and C3, if this is possible. And these screws reinforced with bone grafts from my hip.

    My surgeon had offered to do the surgery in July (just gone) but I have put it off until February/March 2016, as I have a busy end of year including an overseas trip and our son's wedding in November.

    Putting it off also allows me time to try and improve my fitness and lose some weight before the operation and hopefully aid my recovery. I am thinking about doing Pilates or Yoga to try and lengthen / strengthen the muscles in the rest of my spine as I figure that there will be a fair amount of compensating for the loss of movement in my cervical spine.

    Whenever dining out, my friends and family have got use to me asking to sit at the head of the table ha ha ... but this request is really out of necessity as it is really difficult to sit and converse with the person sitting immediately to your left or right. I have had to give up riding a motorbike because ... aside from difficulty/pain turning my head, when travelling at 100km and turning to look at the passing scenery, the wind catches and turns my head more than I intended ... or like. I'm aware that driving a car will be a challenge after the operation and I'm trying to figure out other things in daily life that will also be a challenge. Drinking from a water bottle may be a challenge when you can't tip your head back. Will I still be able to tie my shoe laces? Will I be able to sleep with a pillow? Will I be able to lie down, or will it be more comfortable reclining in a chair to sleep?? Will I be able to pick up my 2 year old granddaughter?

    Post-op and following discharge from hospital, will I need someone to help me get up out of bed/chair. Will I be able to chew ok or will I need a soft diet?

    I'm sorry I've gone on a bit but ... not a day goes by that I don't think about the operation and find myself worrying to the point of feeling a little down about it all.

    At my last appointment with my Orthopaedic surgeon I asked him Orothopaedic versus Neuro surgeon and he was pleased to tell me that he had discussed (here in NZ we have regional consultant discussions including neuro surgeons, orthopaedic surgeons, anaesthetists and radiologists) my case at regional and that he himself and a Neuro Surgeon would be doing my operation together. So ... that basically answered my question and I was a little happier about that.

    I would welcome any input and love to hear from anyone.

    Kind regards ... Mabel.

    Surgery day has been set for March. Not sure that this forum has helped me in any way. :-(
    Would love some constructive and positive feedback.

    Not feeling any better about the op. Trying really hard to be positive but struggling a wee bit.

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  • patrain17ppatrain17 Ottawa area, CanadaPosts: 103
    Hi Ian and Atllantoaxial! It sure is hard to find info on such a rare condition. I had a condition called basilar invagination. It meant that my brainstem and spine were crushed by my ondontoid bone and I was suffering of all sorts of symptoms and like Atlanto was told that my life was in danger if anything were to happen to me. My symptoms made my decision easier.
    It's been 4 years now. Actually, I was still in the hospital 4 years ago today. I am fused from occiput to c4 and can't say life is always easy but many of my prior symptoms have resided. After my 2 step surgery my wife was there to take care of me. She helped me a lot. She was there to help me take baths and shave but I was able to do most regular things I needed. I slept in a recliner for a good part of 5 months and was off of work for 4 months before I went back without even being able to move my neck. I was lucky enough to have someone drive me to work. I now can drive but prefer letting my wife do the driving in high traffic areas.

    If any of you have any questions feel free to message me. I'll be more than happy to answer them. I wish I had found someone to talk to four years ago to help me get trough all this

    Don't worry, life goes on. Human beings are really good at adapting to new situations.

    Take care everyone!
  • Hi,

    Sorry it's been so long since I posted. I see you will have had your operation Mabel - how did it go? Sorry I didn't post here beforehand. If you're still in a collar, I don't think you have to worry about drinking from a water bottle or tying your shoelaces - I haven't noticed them to be a problem, and as far as rotation goes, it sounds like you have limited rotation anyway and pain, so hopefully the fusion shouldn't make too much difference as it will isolate the painful part.

    I've just got back to driving - I had a driving assessment and then a couple of lessons mainly on scanning at junctions. Overall it's easier than I thought - the most difficult is turning right at a junction without traffic lights where you have to look both ways before you go (we drive on the left here in Australia :) ), but I am getting used to it.

    I thought I would just add my injury as well: I had a very big fall and had atlanto-occipital subluxation (internal decapitation), that is quite rare to survive.

    My fusion is a bit out of alignment though, and my neck/head is now at an angle (a registrar told me I'd been fused like that because they 'don't use a tape measure' (!)  I thought I'd ask your hopefully independent opinions.

    The whole of the left hand side of my body feels different. I have pins and needles in my hand, but it the rest of my body just feels like an extension of that. I have so much pain and discomfort on my left hand side.

    Whenever I've mentioned it to the spinal doctors, they say 'oh it's probably because of the brain injury' (yes I also had a brain injury to add to the everything else!) but I'm wondering whether it is that or some kind of compression because of the fusion.

    I actually hope that it's due to the fusion and that it would be possible to revise it. I know it would be a big operation, but I really hope that it's possible to do something about it.

    Pat, did I see on another post you made that you said you had numbness on one side of your body? What did it feel like? Where was it (i.e. from the neck down?) and did it go away after the fusion?

    I was just thinking as well, I joined a couple of Facebook groups for other injuries I have (tibial plateau fractures and ankle fusion) which have been really good for sharing information with others, and finding out things you want to know. Perhaps worth doing for this.

    I've gone on quite a bit now! Hope you guys are doing well,


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