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

Standards agreement and posting rules
Please note that Spine-Health reserves the right to edit any messages posted or submitted or e-mailed to the Company and use them for content on the website or in other company materials. No e-mail solicitation or advertising of other companies, products, services, or web sites is permitted in the Spine-Health.com forums.

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

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 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

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

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.