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C1 C2 fusion 20 years ago now headaches

Jo1124JJo1124 Posts: 17
edited 06/11/2012 - 7:42 AM in Neck Pain: Cervical
Hello, I was in an auto accident when I was 19 years old, it was found that I had os odontoid missing and needed to have fusion of c1 c2 using bone from my hip. they wired it together and I had a halo on for 4 months. Well here I am 20 years later with severe headaches and neck pain. I have been to every doctor and am not getting anywere. Going to a pain clinic and have had 3 steroid injections into my neck and has not done anything - no relief. I am desperate, and I cannot seem to locate anybody that has had this so long ago like me. I think I may have cervicalogenic headaches? I just cannot get no relief.


  • The docs who have been treating you, are they just pain management docs? It wasn't until I saw a good neurologist that he discovered the root of my headaches was coming from C2-C3. A few simple nerve blocks helped to determine that.

    Don't give up, there are things that can be done, and docs who can help.

  • My 23 yr old son just had his second surgery for os odontoideum a little over a week ago. I guess it would be extremely difficult to find someone who had the surgery 20 years ago - it's such a rare condition.

    I hope you find relief...somewhere, somehow. My son's future scares me - you've proven my fear to be justifiable.

    My very best regards to you.
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  • Thank you all for responding, I have been back to the physician that performed the surgery and to several other physicians and Im not getting anywere, I used to just get headaches when the weather changed but I have had a non stop paid since june of last year, (its enough to make you go mad). My next step the pain physician wants to do is a nerve block, Im afraid. but desperate. they have me on ms cotin (which I dont like) but Im desperate for releave. The pain is coming from my neck and just radiates up my head thru my temples. I read how everybody here is either just getting it done or is not too far from having it done allready!!
  • Hello,

    I know its been awhile since anyone posted here, but I had to write in because I've experienced the same issues. My C1 C2 fusion was in 2002 due to os odontoideum. I was pain free for about 7 years but then the headaches started.

    First in the neck area and back of my head/skull, now they have radiated up throughout my entire head. It feels like my brain is being squeezed. My temples, even my eyes, it just all feels very sore and uncomfortable. I'm in the process of getting back in touch with my surgeon, who ordered an MRI and ct scan.

    I'm very discouraged and am also wondering if anyone has seen any success with any of the follow up treatments. Aspirin, Tylenol, massage, etc don't seem to help.
  • hello all and thanks for your responses. Its been awhile since Ive been online.
    I have left the pain clinic I was at and have seen several physicians I am currently at a new pain physician that doesn't just throw pills at you. Im scheduled for a third occipital nerve block next week. Im praying this works I feel like my life is just falling apart. I have had another mri completed and seen the neurosurgeon just today and he says everything is ok. But the pains I get thru the back of my head and radiates through out my head is driving me crazy. I leave work in tears on some days I just cannot get no releif. I beleive I have occipital neuralgia. I still have not located anybody that has had this surgery so many years ago like I did. The previous post from stacy is exactly what I feel too.
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  • my head in ice to get some relief, jo, did the first 2 occipatal nerve blocks give you any relief?

  • I have had 2 3rd occipital diagnostic nerve blocks the last one just this past tuesday. And I had the worse headache after it did nothing to releve my pain. So I have been waiting now for 2 days for them to call me with the next plan of treatment. I dont suppose I will be able to get the radiofrequency done now that the diagnostic nerve blocks havent worked. I feel like these doc's just play games, they wouldnt tell me what they were putting in or the effect it will have- they said that I need to tell them my level of pain after the injection. I wish I could figure out why I am having these neck and head pain. I truely feel that its from the fusion I had 20 years ago but there seems to be no releve in sight

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    Post Edited by Moderator haglandc
  • shame the nerve blocks didnt help, i have these occipatel headaches, its nerve pain and it unbearable

    i pack my head in ice to get some releif, maybee you could try that

    im going to get the nerve blocks when i get my next one

    hope the drs will do further testing for you and come up with a plan
    please let us no what your dr says

  • as haglandc suggested, seeing a neurologist may prove beneficial in diagnosing

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