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C1-C2-C3-Occipital fusion information

ChucklespCChucklesp Posts: 5
edited 06/11/2012 - 7:40 AM in Neck Pain: Cervical
Hello all, going to try and keep this short.

They think my odontoid break happened around age 5 but I think it was a motorcycle accident at age 17, regardless it was never diagnosed until about 7 years ago. At the time I was an orange belt in AikiJutsu/Aikido and they told be I had to stop as the bone migrated and was impinging on my brain stem. I also have a congenital maligned curvature of the neck or something, it make a really curvy curve instead of a nice rounded curve. I thought the neck pain was a result of 6 years wrestling and just delt with it. The first 4 surgeons said operate or die (all the while still taking full falls in the dojo) until Cleveland clinic doc said I had way to much function to risk the surgery at the time. I am now 4th degree black and own the school I started my training in. I can no longing take falls. Well, I am showing signs in my legs of diminished nerves or something or other, noted by two different neurologists. My migraines are 3-4 times a week and the neck and upper back pain its rather harsh. They say its only going to get worse now and the longer I wait the even more dangerous the already dangerous the surgery is going to be.

Anyone have this surgery? They say only about 10 a year are ever done.
Surgical traction for 5 day. Is that strapped to a board?
Recovery.......2 weeks 2 months? Will I be able to type and thus work?
Am I looking at major nerve damage that won't get better? Talking about from the cutting not damage to brain stem/cord.

Sorry it got long, I am rather ate-up about all this at the moment.

Any input would be wonderful..............



  • I'm going to PM you a members name who may be able to give you some insight. This member is not active here at the moment but is still around.

  • Chucklesp said:

    Anyone have this surgery? They say only about 10 a year are ever done.
    Surgical traction for 5 day. Is that strapped to a board?
    Recovery.......2 weeks 2 months? Will I be able to type and thus work?
    Am I looking at major nerve damage that won't get better? Talking about from the cutting not damage to brain stem/cord.

    Howdy Charles (C please PM me that member too?)

    I hope someone has an answer to your questions as well, as I am probably getting fused at the C2/3 level within the year. We haven't talked details yet as to what he will do, but your questions just raised questions in my head!

    Mine was from degeneration, and especially after eating, I get the headaches at the base of my skull, and the wrap around to my ears and are killer! Also upper (left) neck pain, and "zingers" down the neck. Sorry to hear you are facing this. Hopefully it will all work out well for you Charles. *HUG*


    Ps... Even looking on the internet I realized that levels C1-2-3 are rare, but (wow) I didn't know it was THAT rare. :-(
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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  • Charles,

    My 23 year son has an os odontoideum and he's also being treated at the Cleveland Clinic.

    He was involved in a car wreck at 17 that broke his nose,
    both eye sockets, cheekbone, skull base. He required surgery to repair the dura (outer lining) that tore away from his brain (crainiotomy). He recovered AWESOMELY without any lasting affects from this car wreck.

    It was merely by chance that someone noticed the os odontoid process was incomplete. They deemed it as an old trauma or congenital defect...NOT related to the car wreck.

    To my knowledge, there are only four surgeons in the U.S. who have done this surgery because it is such a rare anamoly. Edited at Cleveland Clinic performed my son's surgery Oct. 2008. Edited used small screws - as well as cables for additional support. They confirmed twice via CT Scans that the bone graph (from son's hip) had fused well.

    In Nov. 09, my son was changing an overhead lightbulb and broke the bone. omg! wtf? We are devestated. He was FINE after that car wreck and NOW can't change a light bulb??? He's an electrician!

    Doc. Edited is going to repeat the surgery using long screws (riskier technique) on Feb 10, 2010. They're waiting to make sure my son quits smoking first since nicotine interferes with bone healing.

    ok...my point in this long story is that even after the horrendous accident my son endured....he never had ANY signs or symptoms of pain, neurological sensations, etc. yet they insisted he HAD to have this surgery. My son waited four years after the car accident and then decided to have it done because they scared him into it - telling him that ONE wrong move could either paralyze or kill him. He said he didn't want to live his life in fear and wanted to ride four wheelers, etc. My thoughts: "How about just living your life w/o four wheelers and w/o PAIN instead?".

    None of it makes sense to me but I'm not a doctor. Edited is an arrogant blah blah (although a very good surgeon) whom I thought was merely wanting another knotch in his belt by performing this surgery. (One more before he retired.) Reading your post - that they told you surgery wasn't necessary - stunned me. It gave me a higher vote of confidence that my son "must have" needed this surgery...yet I still don't understand HOW he could've broken this bone!!!!

    I'm getting off track. Sorry.

    The first surgery went very well. Brian was out visiting friends four days later. He wasn't allowed to work for six months but went back (electrician) to work with minimal problems. He said his hip (where they took bone graph) actually hurt worse than his neck. (That's YOUTH for ya!!)

    Your questions:
    1. My son had NO symptoms or pain and the Cleveland Clinic insisted on surgery.
    2. He wasn't put in traction afterwards, he wore a hard cervical collar for six months.
    3. He wasn't allowed to return to work for six months but typed on computer constantly and partied with friends.
    4. The lasting affects from initial surgery were memory problems (which could be from brain surgery), occasional headaches that made him miss work (perhaps 10 days out of 180) and surface (skin) sensations such as temporary numbness from time to time.

    Sorry this post is so long too - but we are ate up with it right now, as well.

    I asked a few of "my" doctors about this condition and whether or not my son should have the first surgery. Only one doctor knew what os odontoideum was - and he gave me a definite YES. <<--Little did I know at the time, that decision cannot be made without flexion xrays done to determine the degree of instability (if any). Had I known "then" what I know "now", I would have asked <b>Edited to SHOW ME the flexion studies and SHOW ME the instability. (I probably wouldn't have understood what I was seeing anyways....but I'd have felt better about it.) I've read that many times the pons will graph itself to a surrounding bone and be stable; however, you know as much as I do that there's a lack of information on this. The studies done in Germany are the most informative and complete.

    It's not my intention to encourage nor discourage you...just share our reality. Feel free to private message me.

    Very Best Regards,

    Post edited by Authority Member haglandc to remove name of medical professional.
  • these doctors...at all.

    I've been told I must be in "unbearable pain or paralyzed - whichever happens first" <<--quoted -- before they'll do surgery. Define "unbearable" for me...and look at how I'm living my life. Define why they've pretty much told you this same thing - yet did this to my son? Does patient age have something to do with their decisions???<br />
    Brenda - You've been through quite a deal. I hope I've helped and not done any harm - yet I don't make reality up..it just happens. Please feel free to PM me too.

    It would be great if these great minds would further study cadeavors to determine if this condition is truly as rare as it is - symptoms or not.

  • Sorry to hear your son had to go through all that, but in the same breath, I am really happy it went so well for him!

    My surgeon doesn't use criteria as strict as yours! He uses the supportive diagnostic testing and level of symptoms to decide whether surgery is an option. He also looks at how the pain, numbness, weakness is affecting ones quality of life.

    Your post does give me a bit of an idea of how long the recovery process is, thanks! I am hoping to avoid being worked on at this level, but I also know I might not have a choice in the future. Fingers crossed for now. So far the bulging changes are gradual, but what makes me nervous is that the disk could "pop" like I had happen at the C6/7 level - fast. I am hoping that doesn't happen. Take care, and again, Thanks!!

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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  • Just to let everyone know I went ahead with the surgery and it has been six weeks. I put a full week in at work last week and am getting around quite well now. I have no numbness in arms or legs and normal numbness at the incision site that I expect to go away. I am returning to teaching Martial Arts tomorrow, teaching only for now until post op appointment. Besides a student screwing up putting my tube in and mangling my throat the surgery went really well. Would be nice to be able to swallow proper but I think it will get better. I remember only the first 2 hours of traction before the pain made them snow me for the entire 5 days. Because of the tubing screw up my body went into a "fit" almost like an epileptic fit but not really. They canceled the surgery on that Thursday and rescheduled for the next Tuesday. Had one heck of a hallucination that I won't get into but it had me off the table ripping all my tubes out and reaching for the main on my neck before they got to me. hehe scared the crap out of em. I could go on about my experience but won't. If anyone ever needs to talk about my experience feel free to contact me, I could not find anyone who had this done to them before I went through it so would be happy to help anyone who may have to in the future. Thanks to all on this list.

  • Chuck, what wonderful news! I'm very happy that things seem to be working so well for you.

    I hope you'll keep us updated. Take care!
  • So happy to hear that the surgery is working well for you. I will probably be getting an updated MRI of my cervical spine within the month - then they can compare it to last October. My issues up high is the C2/3. A few questions if I may?

    How long was the surgery?
    How long in the hospital?
    Did they put you in a halo type device or hard collar?

    From your x-ray, it looks like the standard plate and screws are still used up there?

    For me right now, biting into anything bigger than say a piece of Dentyne gum, and I get the mother of all headaches by the 3rd or 4th bite. If you too got pain or headaches, did they stop?

    Sorry for all the questions, but like you've said, and seen, there aren't many of us with "upper cervical" issues around. I've gotta start playing the lottery with my lovely luck these past years! :)

    Again, so happy to see this is going good for you. It gives me hope. Thanks in advance for your answers. *HUG*

    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • The surgery was around 6 hours.
    I started traction on a Sunday surgery was done the following Tuesday. I think I was in the hospital 2 to 3 weeks total. I really don't remember exactly.
    I was in a hard collar but not for long, less than 2 weeks. They did not want my neck muscles to atrophy.
    Yes, titanium plate and screws. I am guessing from Lowes or Home Depot :)
    The headaches are still with me set off by weather and certain foods such as chocolate. I have less neck, back and shoulder pain now than before the surgery, no where near what you are describing. Before I went to my tmj guy after the surgery I could not open my jaw more than a quarter of an inch now about half an inch because he does not want to push it until I am fully healed. All done with a bite plate changed every 2 weeks.
    Hope this helps! Feel free to ask for clarification on anything.

    *HUG* *Back* *@* *YA*

  • 2-3 *weeks* in the hospital! That alone makes me hope mine stays as it is - I don't think I will be that lucky, but Wow!

    Unless something real weird happens, I would be 1 level up there, so I guess my table time will be much less. I just realized today after looking at your avatar again, they did the procedure posteriorly?

    TMJ was brought up with me since I am a constant grinder, but that was ruled out. I did try a mouth guard a while back to reduce the grinding, but just having my jaw changed that little bit with that thing in there - major headache within the first few hours of sleep! So scrapped that thing fast! (G)

    Chuck, thanks so much for answering my questions. I am sure more will pop in the ole brain, but can't think of them right now. I hope today finds you continuing on the upswing of recovery. You seem to be coming along pretty well from what you've posted. Tell your body to 'keep up the good work.' :)


    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
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