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living with an occipitocervical fusion

13

Comments

  • 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
    please click on link for helpful information!
    ~ spine-health moderator, savage
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    I will find time this w-e to try to answer a few of your questions and reassure you I hope! Take care!
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  • 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.
    Alex
  • SavageSavage United StatesPosts: 7,385
    welcome to spine-health
    please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • 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?
    Rrgards,
    Ian
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  • SavageSavage United StatesPosts: 7,385
    welcome to spine-health
    please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

  • SavageSavage United StatesPosts: 7,385
    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!
    Sue
    Honorary 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.

    welcome to spine-health
    please click on link for helpful information!
    ~ spine-health moderator, savage
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 106
    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,

    Gareth 

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