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c1c3 Spinal fusion surgery

hello everyone, my name is Chris and 10 days ago I had occipital spinal fusion surgery with two rods fused from c2-c3 up in to plate screwed into skulls bone because I found out recently I was born with birth defect to wear clivus and occipital bone did not grow to f ull length as normal person in womb would. I just turned 29 on day I found out, I guess is very rare condition and a handful of procedures for this are done in US every year. it all started last year when I was diagnosed with hodkins lymphoma, and once it went into remission 6 months later. I had constant numb feeeling in feet and all parts of legs throughout day. it kept getting worse untill then one day when I would bend down a shocking feeling would go down my back and temporarily paralyze parts of body , I went and saw neuro right away thinking neuropathy from chemo effects. untill they did 3t mri and discovered defect was sent straight to NS and told me surgery was needed right away or paralysis would start soon and we cant fix that. after trying for two weeks of searching about thia condition and getting second opinion, only for second doctor to tell me he's surprised im alive because of playing so many contact sports over the years and especially football high school football were I competed for four years as startin DE and even had college scholarship I ended up turning down because my gf was pregnant with my first child and wanted nothing to take me and time away from watching her and now my son who wasn't to long after my daughter lol but point I'm trying to make is doctor told me he was surprised we were talking, becAuse people who are born with condition, dont usually find out till 30's or 40's and usually active athletes who die on field or soon after hard hit to head is because of this condition we are born with but never really checked for untill later in life. I myself am still trying To understand but things over the years now make since. constant stomach issues, very very high tolerance for pain, etc..al makes since and so happy to find site now were people are going through sort of same things. :-) I had surgery 9 days ago, two days of traction before surgery (which was worsf pAin) but I'm happy to say already numbness completely gone everywhere and also paralysis in legs especially has stopped and dont feel stiff neck pain like before, which going thru chemo made that daily pain look easy. again im sorry for writing a book about my situation, but thank you for reading my story. and again happy I found a site were people have known what I'm going thru and what we all went thru. hope to correspond and asks questions to people who have gone this awhile ago and can share rehabilitating and healing and get back to normal life (somewhat) lol again my name is chris and makes me feel good to know we are not aloneand with this rare conditions, we have fellow soldier's to fight with who are going through same battle and can be there for suport and strenghth. and all of us will win our own battle,. again my apologies for half of my bio. look forward to talking with everyone
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Comments

  • patrain17ppatrain17 Ottawa area, CanadaPosts: 105
    Hi Chris,

    I'm really sorry you had to go through so much. The battle against Hodgkins must have been really hard and then the cervical problem. I have a lot of sympathy for you.

    My name is Pat and apparently I was also born with a cervical defect they called basilar invagination. It's a very rare condition where the odontoid process pushes against the skull compressing the lower brainstem and part of the upper spine. Like you, I had all sort of symptoms. Stiff neck, headaches, tingling on my head, in my hands and almost all of my left leg. I could walk, but at some point I would always start to have pain in my left leg and then I would start loosing control of it (drop foot). I've had the lightning bolts going through my spine and difficulty swallowing (even my own saliva). Finally, my surgeon found out (because of the moniters) during the surgeries that my breathing functions were also affected by my condition.

    Like you, I played high level contact sport (hockey) and I guess I was lucky to still be alive. That's what surgeon told me. When they discovered my condition they told me to stop everything. They put it out this way : even a slight bump in the back of my car causing my head to tilt suddenly backwards could kill me. WOW! Is that crazy enough.

    Anyways, a few months later I was on the operating table for my first part of a two part surgery. First surgery lasted 6,5 hours while they were trying to remove the pressure that was being put on my brainstem. Second surgery lasted 11,5 hours as they resected the rest of what was putting the pressure and fused me from occiput to c3. This was quite an incredible journey. After the surgery my surgeon told me that the canal through which all the nerves go through coming out of my head was over 50% gone. I don't know how many times he told me that he didn't know how I was able to function like this. He also told my wife the same thing a few times. Most of my symptoms are gone now. No more tingling all the time. I can now walk fairly long distance and stay up for a long time without loosing control of my leg. I also have stomach issues that haven't gone away since and a very high pain tolerance level. Not everything is perfect but things have improved. I was 39 yo when I had my surgeries 16 months ago. The hardest part now is to learn to live with limited neck movement and accepting that there are a lot of things (especially sports) that I can not do anymore. Accepting your own limitations isn't always easy.

    I was glad to read your story and also very sad to see that you had to go through Hodgkins also. I can't even imagine how hard it must have been to go through such hardship in so little time. I'm also very happy, to finally find someone who can really understand what I went through with my surgeries and can relate to what it is like to live with that type of fusion. I hope we can keep in touch. Don't be afraid to ask me any questions.

    Take very good care of yourself,

    Pat
  • Gentlemen, I am glad both of you are doing much better considering what you have been through. It goes to show how resilient us "spineys" are that you functioned when doctors were surprised you were there in front of them.

    Here's to your continued improvement!

    Charlie
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 105
    Thank you very much Charlie!

    Seems like you been through quite a lot yourself too! I hope you're doing as best as you can!

    My cervical problems have impaired the rest of my spine and I am having problems with my thoracic and lumber spine also. A lumber fusion is also in my future but hope to delay it as much as I can.

    Take care!
  • thank you pat and Charlie, just to hear back from someone for first time in months that actually experienced alot of same things I did as well, doesn't make me feel crazy anymore and also the mind frame of thinking it was cancer again and there sugar coating it " with a rare disease" until it fully came back as active, for the two months before we had this surgery last week. each visit I would call this NS a whack jpopop I p :-) out nb :)ob off him trying to scam me. because I work in medical field and with all symptoms that we all had now, it would just seem like neuropathy and if it wasn't I was already thinking nerve damage from chemo possibly? but after going for a second opinion and hearing from another NS that this type of disease is real and very rare, I didn't know what to think, he brought up internet articles I was able to read, showed me articles of this and bookings of this surgery being done only once or twice a year at only two hospitals in southern Orange county. where I reside. when I then agreed afted having a long appointment with friend of mine who was giving me second opinion or know I realize he was just helping understand the truth is all I wanted and this was real, which he did and then asked how soon becore surgery and he said as soon as posible because the brain stem and spinal cord were both now not being protected by anything, so when i asked when is his next surgery spot he said tomorrow but he can't do this type of surgery, only one doctor that was close to me is qualified to do this type of surgery and it was the same doctor I saw on first original NS consult, thesame guy I had called a crook. long story short, he knew I got second opinion and he was fine with it and said he would have done same thing. and received great care so far. did either of you Charlie our pat run into that? or anyone else here that you thought if this was So rare, questioning if it was even real? and to pat when your legs would go numb and all other side effects we both went thru. I can never get anyone to believe this type of other pain description. after sometimes sitting for a long period of time, when you would get up to walk did it ever fell very stiff on one side of hip just out of nowhere and when you started to wAlk did it ever feel like your site laces were tired really tight even tho they wernt? and alzo in same sometimes pain of shoelaces being tied really tight felt like glass in s hoe? or my biggest and what I considered To be worst symptom, did at night shsn u were trying to fall asleep and just couldnt because felt like something new would crawl on body ever secs- mins but in completely different spot than before??

  • Wow! You have been through so much recently.
    Hopefully now you are on the road to recovery and will be able to really enjoy your family.
    You have already discovered how supportive Spine Health can be when you find someone else who really understands what you have been living with.
    As your condition is so rare, it is great that Pat has found you. I know that he will be thrilled to have found a fellow patient who understands what he has experienced too.

    Wishing you both well in your healing and recovery from this very big surgery.
    Take care
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 105
    edited 05/19/2013 - 9:23 AM
    Hey Chris! Me again!

    I'm glad you don't feel crazy anymore! I think it was normal for you to have doubts and to think that this couldn't be happening, especially after your fight with Hodgkins. This condition is so rare that you're actually the first person I've talked with who's been through pretty much the same as I did.

    I live in Ontario (Ottawa area) and the first neuro who diagnosed my condition was a really nice man. He's the one who told me that a simple bump could kill me. He acknowledged that he wasn't fit to do the surgery and contacted a specialist in Toronto who could do it. Problem is, that specialist never contacted me back, so 6 months later I called my neuro in Ottawa to tell him that no one from Toronto had contacted me. During that time a great neurosurgeon came back to Ottawa (Dr Amin Kassam, you can look him up on the Internet) and I was referred to him. A week later I met with him and as soon as he saw the MRI's and CT scan's he told me that I had to do something or else it could be dangerous for me. He told me to not worry because he could do it and that he had developed a technique that was much less invasive. Instead of cutting my throat to do the decompression, he could go through the nose and do it. That's what he did about 3 months later in a 2 stage surgery. He made me feel like I was in very competent hands and actually I was. I great doctor with wonderful bedside manners. I met him a few times following the surgery and he was so compassionate and very caring. He's the one who just couldn't believe I had lived like this for so long.

    Did I wonder at times if this was possible? I sure did. I researched over the Internet and information on this condition was sparse. I talked with my family doctor and let just say that he was scared for me. But 2 neurosurgeon told me I just couldn't live like this and they were actually right. When my surgeon told me after my surgeries that even my breathing functions were affected by my condition, I just couldn't believe it but I noticed the difference. I remember telling my wife that I felt like there was so much more air going in my lungs after the surgery without knowing this. Scary when you think about it!

    As for my symptoms, my left foot would get so numb when walking that I just couldn't feel it and lost control. Never had the shoelaces feeling like you encountered, but I think we're all different. My worst symptoms were that drop foot problem, the swallowing problem and the 3 times I woke up at night not being able to move/feel my left side. That was scary and I also thought I was crazy until I told my first surgeon and he saw this as an alarming symptom. I've also had the hip/groin/knee problem and I still do. Certain movements will trigger a shock going from my hip, to the groin and ending in my knee. I can hardly move my legs apart because it is too painful on my hips. OK! Enough complaining! Once again, it's very nice to be able to talk with you Chris. Don't afraid to write anything, I love to read what you have to say or what anyone else as to say concerning our spine problems.

    Take care!

    Pat
  • RangerRRanger on da rangePosts: 805
    Thank you guys for sharing that information here, very interesting indeed as I am sure many others here will agree.
    Wish you both the best in this long journey, keep us all posted here.
    ranger
  • charlie6017charlie6017 Posts: 412
    edited 05/19/2013 - 10:27 AM
    Hi guys!

    Chris, I understand where you are coming from and certainly get why you would want at least a second opinion. You deserve all the answers you can get and have been through a lot. Keep hanging in there!

    Pat, I can understand how it's impacting you, as I have pain and stiffness up and down the entire spine......the arthritis is everywhere. I feel like I have it easier than you do, considering your situation. I woke up this morning feeling like I was kicked square in the middle of my back.

    Keep hanging in there, fellas.......and hope you're having as pain-free of a day as possible. :-)

    Charlie
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 105
    edited 05/19/2013 - 9:17 AM
    Guys, you don't even know how good it feels to be able to have the support of others that understand your situation. Even if it's just in writing it's really nice to have. Thanks Charlie and Ranger! I can now see the real power of this community.

    Pat
  • RangerRRanger on da rangePosts: 805
    Things could have been so much different for any one of us if we didn't have access to some of the best medical doctors and facilities available. Pat, the outcome of this for you and Chris could have been very tragic if either one of you would not have pursued the symptoms you were experiencing. The surgery is very difficult as you explained especially so close to the brain.
    I have three c-spine levels fused, I will be having more extending the fusion above and below the previous C4 thru C7.
    Honestly, I feel my issues are a walk in the park compared to what you two have endured. Thanks for putting this all in perspective for many of us here, it's good to have a reality check now and then.
    Be strong,
    ranger
  • patrain17ppatrain17 Ottawa area, CanadaPosts: 105
    I think any spine surgery is hard to deal with but I have to admit that the surgery I had was very scary. Like you said, it was so close to the brain. On another level, everyone deals with their problems as best they can and you can never compare. What is a walk in the park for you, can be very hard for someone else. I had very good support which is not everybody's luck. I wish everybody had the support I had.

    Take care and thanks for your support also. If you ever need support and words of wisdom I'm there. Always stay positive!

    Pat
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