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C1 C2 fusion 20 years ago now headaches

Jo1124JJo1124 Posts: 17
edited 06/11/2012 - 8:42 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.
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Comments

  • 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.

    "C"
  • 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.
    ~Jasro
  • 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.
    -T
  • 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.
  • my head in ice to get some relief, jo, did the first 2 occipatal nerve blocks give you any relief?

    flower
  • 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
  • EDITED

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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

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

    flower
  • Jo1124-
    I am so very sorry to hea of your headaches. Have you ever seen where the greater occipital nerve comes out of between C1/2 and turns to head directly back up the neck to lay against the scalp? I'm just curious if your doc has ever mentioned it as a possible pain generator and headache trigger>

    It's just that I get migraines from this nerve getting inflammed and Botox shots every 3 months help deaden the nerve, hence fewer headaches and no sizzling/burning ropes of fire up the back of my scalp.

    I wish you peace-
    Mack
  • Jo - I am new to the forum and came across your post from 2009 regarding your C1/C2 fusion 20 years ago. I am so sorry for your pain...it sounds like what I am dealing with right now. The pain from the neck up the back of the skull and through the temples. It does sound like occipital neuralgia (from what I've read online, which is extensive.....it seems like when we are in pain some of us take matters into our own hands!). I had a trigger point injection last summer for those symptoms and it actually worked for a while. I recently had a facet injection which only worked for a couple of hours (while the lidocain was in effect) and then wore off. It seems the only relief I get is from my cervical traction or chiropractor visits, but the relief is temporary.
    I know your frustration about doctors......my doctor pretty much told me it was 'in my head' and put me on antidepressants. It wasn't until I went to an experienced chiropractor after months and months of constant pain that he noticed the abnormality in my C1 which is the root of my problems.
    Anyway, I hope you find some relief. I am hopeful that a fusion of my C1/C2 will provide relief from my constant pain, as nothing else has. I trust my doctor (an orthopedic spinal surgeon) and he is the only one so far that has been straightforward with me about my problem.
    Good luck!
    April 2011 C1-C2 Fusion (Brooks wiring)
    January 2012 C1-C2 Revision Fusion (Harms Technique)
    2010 - current: Trigger Point Injections, Epidural Injections, Bilateral C2-C3 Radiofrequency Ablations
  • hello everyone, thanks for all the input. here to update you all. Went to a good pain doc which I had two investigational nerve blocks done, and because they didnt work the doc said Im not eligible for the nerve to be burnt cant remember what the procedure is called medically. He suggest I try cymbalta again.,well I left and just cried on the way home. Just I feel so helpless I have been to so many doctors I just dont know anymore doc's to goto anymore. So I went and joined the local YMCA trying to do yoga and exercise. but thats not really helping either. Went back to my Prime doc so I am on 90mg of cymbalta a night and it seems to help about 50% because i at least am not waking up with the headaches everyday, but they are still there with the neck pain. I guess im not gonna get total relief. I wish I could speak with somebody that has had this procedure done as long ago as i have.
    Tried the ice as one poster suggested. Im only 40years old and I so fear what I will feel like in another few years. It makes me feel crazy.
  • I am 35 years old and had neck fusion of the C1 and C2 about 6 yrs ago. I have low blood sugar and passed out in a bathroom and hit my head on a toilet, which broke my C2 in half when I was 12. I got in car accident when I was 21 and they found the break, which bounded together with scar tissue because I was so young. I didn't need surgery at that time, years later hit my head at work and ripped the scar tissue apart. I have been fine for the years following the surgery, but for the last year I have been having neck pain on one side. Now I get a pain between my shoulders that is sometimes so bad it is hard to hold back tears. Have anyone else had problems like this?
  • Hi,
    Jo1124

    I also had a C1 C2 Fusion about ten years ago, like you I am in pain most every day. Your description of what you are going through matches mine to the tee. I started experiencing the chronic headaches and neck pain about two years after surgery. It was at this time that I went back to my surgeon and he did the full work up with x rays and everything. After looking over the x rays he said that the screws had backed off a little; but he insisted this was not the reason for my pain, he blamed the pain on the nerve that comes from c1 and ends up under my scalp, but he offered me no solution to this problem. So with no help from the surgeon I just kind of accepted that this was my new way of life, and from that point on I have been taking tylenol one's as a means of coping, however as the pain increased I had to keep adjusting the frequency and amount of tylenol that I take. Unfortunately, tylenol doesn't irradicate the pain, but it does cut it in half, or at least it use to. Now I find that even taking twice the recomended daily dose does not help and I have tried several kinds of anti-inflammatory's and muscle relaxers but all of these have proven to be of little or no help at all. Finally I have given in and returned to my family doc to seek some alternatives to my current methods of treating this pain. He has suggested that I go to a pain clinic, and he said that he would set this up but it has been over a week and I have not heard anything from the Doc or a pain clinic. My doctor is not much of a sympathizer, and I have seen him four times in the last two years for this, but he has done very little to help me! So now I am turning to these forums to hopefully get some anwsers, so I hope you guys continue to share your experiences as you have been doing, and I will continue to share mine. So with that being said, I would like to thank you and the rest of the posters for your commitment to this forum, and hopefully we can arrive at an anwser to our problem together.
  • Hi all its been awhile since ive been on. Im sorry for all your pains I know exactly how you are feeling. I have been seeing a chiroprator trying to get thru. I have givin up on doc's Im sick and tired of them to tell you the truth.. Im just dealing with it with vicodan, soma and ibruprofen. Just seems that this is something I will have to live with. I feel better if I keep moving the headaches and neck pain are worse when Im at work = believe that sitting in the same position all day makes it worse.
  • Hi all its been awhile since ive been on. Im sorry for all your pains I know exactly how you are feeling. I have been seeing a chiroprator trying to get thru. I have givin up on doc's Im sick and tired of them to tell you the truth.. Im just dealing with it with vicodan, soma and ibruprofen. Just seems that this is something I will have to live with. I feel better if I keep moving the headaches and neck pain are worse when Im at work = believe that sitting in the same position all day makes it worse.
  • Hello everyone, I have searched and searched for information on getting relief from the pain. Its making me crazy. I have neck pain at the base of my skull and headaches everyday. Its worse when Im sitting. I have been to so many doctors and have had so many test done. Really isnt much info online about what Im going thru with these headaches. They say its cervicogenic headaches, just seems that the fusion has something to do with it. The only test that I havent had done is a ct mylogram, can anybody give me any info regarding a mylogram. Im thinking that when they do these mri ct scan's etc they all pretty much say cannot see the area of c1 c2 clearly. Is it possible that there is a problem inside. heidi
  • I had a car wreck in 1992 around 20 years ago and had a C-1 Fusion.For the most part the first 10 years was ok I did have an occasional migraine. I have also been diagnosed with fybromyalgia,spinal stenosis,bulging disc in lower back, IBS and have had many other health issues and surgeries the past 6-8 years unrelated. I am 43 and go to a pain clinic as well have had many injections nerve burned in my neck it helped some but only 4-5 months. I feel the same pain up the back of my head and tight feeling around front of my scull.sometimes I get nausiated and dizzy.I also have had TMJ and think it is flared up again. you are not alone My next step is I have written down all of my concerns and feelings for my next appt along with all surgeries and meds. I think sometimes our Dr's forget what we are there for or what they have done in the past.One of my problems is the clinic I was going to keep changing Dr's! Edited Good luck to you all!

    Post edited by Moderator haglandc member email address removed from post
  • I recently did the same thing before a surgical consult for my C1-C2 revision fusion. I typed up 4 pages of 'my pain in my neck' and included a picture of me and my daugters to put more of a personal touch on it. After reading the letter, she moved my appointment from a month away to the next Monday (it was Thursday), so it must have done some good!
    I had my original fusion in April of this year using wires and my own bone. Revision surgery will be in 1 month and will be using the Harms method with BMP (bone morphogenic protein). I too have been having horrible debilitating headaches at the base of my skull and shooting up my scalp. The doctore say the donor bone is resorbing and tnus the wires are loose and rubbing on my C2 nerve root. Since the nerve blocks did work temporarily, I may have my nerve clipped, but the doctors don't think it is necessary right now.
    Hang in there! Big hugs to everyone, and have a Merry Christmas and fabulous 2012!
    Monica
    April 2011 C1-C2 Fusion (Brooks wiring)
    January 2012 C1-C2 Revision Fusion (Harms Technique)
    2010 - current: Trigger Point Injections, Epidural Injections, Bilateral C2-C3 Radiofrequency Ablations
  • I recently did the same thing before a surgical consult for my C1-C2 revision fusion. I typed up 4 pages of 'my pain in my neck' and included a picture of me and my daugters to put more of a personal touch on it. After reading the letter, she moved my appointment from a month away to the next Monday (it was Thursday), so it must have done some good!
    I had my original fusion in April of this year using wires and my own bone. Revision surgery will be in 1 month and will be using the Harms method with BMP (bone morphogenic protein). I too have been having horrible debilitating headaches at the base of my skull and shooting up my scalp. The doctore say the donor bone is resorbing and tnus the wires are loose and rubbing on my C2 nerve root. Since the nerve blocks did work temporarily, I may have my nerve clipped, but the doctors don't think it is necessary right now.
    Hang in there! Big hugs to everyone, and have a Merry Christmas and fabulous 2012!
    Monica
    April 2011 C1-C2 Fusion (Brooks wiring)
    January 2012 C1-C2 Revision Fusion (Harms Technique)
    2010 - current: Trigger Point Injections, Epidural Injections, Bilateral C2-C3 Radiofrequency Ablations
  • Hello all thanks for all your post. Im still having my headaches they just dont want to stop. I went to a physician in pittsburgh that specializes in headaches and the doctor told me that they really only specialize in migraines not headache that are orginating from the neck!!! So that was a dead end. I haven't been back to a pain clinic for awhile and am thinking of trying another one. Really dont want to take pills everyday but I really dont have a choice if I want to make it thru my work day. Which is usually the worst sitting in front of my computer for 8 hours a day,if i can move around i do feel a little better but the sitting still that really aggravates the base of my skull and the headaches that wraps around my head. My fusion is stable so they say there is nothing that can be done. Still feel its the nerve thats coming out of c2-c3 just cannot find a good doc to help with that. The injections Ive had dont work. I am starting to just realize that this is the way its gonna be, having this pain everyday for the rest of my life. I hope you all have a wonderful Christmas and a Happy New Year.. heidi
  • Hello all thanks for all your post. Im still having my headaches they just dont want to stop. I went to a physician in pittsburgh that specializes in headaches and the doctor told me that they really only specialize in migraines not headache that are orginating from the neck!!! So that was a dead end. I haven't been back to a pain clinic for awhile and am thinking of trying another one. Really dont want to take pills everyday but I really dont have a choice if I want to make it thru my work day. Which is usually the worst sitting in front of my computer for 8 hours a day,if i can move around i do feel a little better but the sitting still that really aggravates the base of my skull and the headaches that wraps around my head. My fusion is stable so they say there is nothing that can be done. Still feel its the nerve thats coming out of c2-c3 just cannot find a good doc to help with that. The injections Ive had dont work. I am starting to just realize that this is the way its gonna be, having this pain everyday for the rest of my life. I hope you all have a wonderful Christmas and a Happy New Year.. heidi
  • Hello all thanks for all your post. Im still having my headaches they just dont want to stop. I went to a physician in pittsburgh that specializes in headaches and the doctor told me that they really only specialize in migraines not headache that are orginating from the neck!!! So that was a dead end. I haven't been back to a pain clinic for awhile and am thinking of trying another one. Really dont want to take pills everyday but I really dont have a choice if I want to make it thru my work day. Which is usually the worst sitting in front of my computer for 8 hours a day,if i can move around i do feel a little better but the sitting still that really aggravates the base of my skull and the headaches that wraps around my head. My fusion is stable so they say there is nothing that can be done. Still feel its the nerve thats coming out of c2-c3 just cannot find a good doc to help with that. The injections Ive had dont work. I am starting to just realize that this is the way its gonna be, having this pain everyday for the rest of my life. I hope you all have a wonderful Christmas and a Happy New Year.. heidi
  • Hello all thanks for all your post. Im still having my headaches they just dont want to stop. I went to a physician in pittsburgh that specializes in headaches and the doctor told me that they really only specialize in migraines not headache that are orginating from the neck!!! So that was a dead end. I haven't been back to a pain clinic for awhile and am thinking of trying another one. Really dont want to take pills everyday but I really dont have a choice if I want to make it thru my work day. Which is usually the worst sitting in front of my computer for 8 hours a day,if i can move around i do feel a little better but the sitting still that really aggravates the base of my skull and the headaches that wraps around my head. My fusion is stable so they say there is nothing that can be done. Still feel its the nerve thats coming out of c2-c3 just cannot find a good doc to help with that. The injections Ive had dont work. I am starting to just realize that this is the way its gonna be, having this pain everyday for the rest of my life. I hope you all have a wonderful Christmas and a Happy New Year.. heidi
  • sorry dont know how that posted so many times.
  • i had the radiofrequency done on occipatal nerve right side a week ago, so far the pain is worse, I just need to know has anyone had any sucess with it.
  • hello everybody I'm Heidi formally Joe1124 I wasnt unable to get on under my old user name password I'm still hanging in here -I'm still going to doctors trying to get my pain under control but haven't had much help in resolving my painand terrible headaches! Last year I had a nerve stimulator placed on my nerves but a week later it got infected so I had to have it surgically removed. I ended up going from full time to part time and I'm at the point now where I'm contemplating on quitting I cannot do it any longer im crying every day, I'm in too much pain everyday just recently seen another neurosurgeon and they think I have scar tissue from my fusion pushing up against my spinal cord. I'm supposed to have a myelogram scheduled I'm still waiting for the doctors to try to get approval for this thru my insurance. and then another cervical block and if it works this time they're talking ryzotomy but none of my other blocks seem to have worked so not sure if this one will either!! I'm in so much pain everyday and and I am taking so many medications they have recently put me on the fentanyl patch and I'm taking vicodàn and soma and nuerotin I truly feel like I'm going to lose my mind I spoke with my pain doctor just yesterday about seeing a psychiatrist which I never thought I would have to see. Im going to have give up my job and try to get disability. I'm so afraid I've always work ever since I was 16 I've never have not work so this is just very fearful to me.
    Heidi
  • this posted before I was done editing it sorry honey but anyway I have a cervical fusion in c1 and c2 it was done 24 years ago and I have chronic neck pain and headaches everyday all the time and is controlling my life everything resolved around how I feel I am unable to take care of my kids like I used to be able to I can't keep up with my house I'm hanging on barely my house is a mass all the time which I was always able to keep up I was good for many many years like I guess this is arthritis and years of later after having a fusion I had to have it done I had los Medanos Twain so I had no choice my neck was unstable but I had many good years I'm 43 years old now I believe I have carpal tunnel my hands go numb every night and Robin day and my legs are weak I feel very stiff all the time I feel like I can't get any help from the doctors they just want to give you one till after another can anybody give me any advice in regards to disability I think that I will be able to get it I'm just terrified I never quit a job I've been at my place of employment for 11 years and I've always worked since I've been 16 for me to just quit its just scary and I have been fighting this for years now but I am tired of crying at my desk inside lights and trying to force myself to sit at my desk behind a computer I went from full time to part time but I'm still not able to do it can anybody give me any advice please help me. I go to work and I come home and I'm on the couch the rest of the day I just need to lay down cuz my head hurts so bad and its not fair to my children which say mommy always lays down anymore. its hard when everything on the outside looks good but you're broken on the inside
    Heidi
  • I'm speaking to type on my tablet and of course its not to accurate..
    Heidi
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