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C1 C2 fusion 24 years ago

Hello All, I originally joined in 2009 and posted in march of 2010 under username: Jo1124 but I cannot log on under that username any longer so I have a different email and was MIA for awhile. But here is my story: I am 43 will be 44 in a few weeks. When I was 19 I was in an auto accident and It was found that I had os odontoid. I had a c1 c2 fusion with my own bone from my hip. This was my original post from back in 2010

C1 C2 fusion 20 years ago now headaches

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 anywhere. 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.

So to update I have had epidural's, nerve blocks etc, the last procedure was a cervical pain stimulator about a year ago in which I got an infection and had to have it removed. I ended up having to go back to work and when I did I just totally broke down and was going to turn my resignation in, my management offered me part time so I have been struggling with this for the last year. I am taking 600 to 900 mg of Neurontin a day about 7 - 10/325 vicodan's a day and now opana er 10mg twice a day, and several soma's a day. And Xanax when I get totally stressing and need to calm down because I cry everyday.

So recently I am contemplating quitting my job after 11 years, I'm having trouble working 24 hours a week, have done this for about a year and I don't think I can do it anymore. NO I know I cannot do it anymore. I am depressed I come home from work and am on the couch for the rest of the day. I have a 13 and 8 year boys and cannot be the mother Im supposed to be.

We'll my question is that I wanted to get advise on this last CT and MRI I had:

CT cervical spine w. contrast - findings: When compared to prior examination there is increased reversal of normal cervical curve. Postsurgical changes are noted posteriorly at the c1-c2 level. There is evidence of prior fracture deformity of the dens. Nonunion is demonstrated. The bony fragment of the odontoid process is again unchanged at the level of the foramen magnum. This does not appear to be contributing to significant stenosis. No signs any new fracture or bony destruction. Dis spacing is also unchanged. The facets are normally aligned. No encroachment upon the thecal sac is identified. No bony defect are identified. There intervertebral disc spaces are maintained. The paraspinal soft tissue are unremarkable.
1. reversal of normal cervical curve more pronounced on todays exam.
2. nonunion of odontoid process. see body of report.
3. Remainder of cervical spine is unchanged.

MRI cervical results:
Findings: Susceptibility noted dorsally along the c1 through c levels from fixation hardware. Evidence of prior odontoid fracture noted. No change in cervical alignment and no marrow edema. The disc is spacing is maintained throughout. No prevertebral or dorsal ligamentous edema. There is no abnormal soft tissue or bony enhancement in the cervical spine. The cerebellar tonsils are above the foramen magnum level and the craniocervical junction appears appropriately aligned. There is no abnormal intramedullary enhancement. The cervical cord is normal in caliber, configuration and signal.

Dorsal aspect of the cord at the craniocervical junction is not well assessed for signal abnormalities and even contour given the artifact.

Multiple levels of mild facet arthrosis present.

Uncovertebral hypertrophy at c3-4 without significant narrowing.

at c4-5 small posterior disc osteophyte complex present with only mild ventral flattening of the thecal sac. There is a mild uncovertebral hypertrophy.

at c5-6 small broad disc osteophyte and mild uncovertebral hypertrophy without significant narrowing. There is mild ventral impression on the thecal sac.

at c6-7, mild posterior disc osteophyte complex eccentric to the left parasagittal region as on the prior exam with only mild ventral flattening of the thecal sac. No foraminal narrowing.

c7-T1 no significant narrowing.

no cord lesion or abnormal enhancement

Postoperative and posttraumatic findings in the upper cervical spine are unchanged the prior exam. Mid to lower cervical Discogenic changes are similar to the prior as well with mild resultant canal narrowing.

Sorry so lengthy, I need some advise. When I look at the CT vs the MRI seems one says one opinion and the other is totally different.

I have worked since I was 15 non stop and I'm going through some mentally challenging decisions, I cry everyday because of these headaches. I cannot be the mother I was at one time, I don't want to leave the house.

I am thinking of applying for Disability but I'm so terrified!! I tell myself every morning to push and keep going then I have a terrible day ( I sit and do medical billing) desk work which makes my neck and head hurt worse. I review these blogs and facebook groups and really cannot find many ppl that have had a fusion on 1 and 2. I am lucky to be alive and walking.

Going back to UPMC presby in Pittsburgh PA to see the Neurosurgeon for what he thinks, my first appointment he basically said another pain stim, which I don't want, I was so good for so many years and now the neck pain and headaches are a nightmare. I think I have occipital neuralgia plus more issues on the lower cervical levels.

Please help. Heidi


  • senior41ssenior41 Posts: 7
    edited 11/14/2013 - 11:36 AM
    heidi43, Like you I have head and neck pain. I had a 2 level disc replacement for the same symptoms in 2009 and was doing great until a few weeks ago. I am having a CT Scan next week. A C1-C2 Fusion does seem unusual. I would think that Drs could identify the nerves which feed the neck and head and remove the bone, etc which impinges on them. Meds are temporary at best. Hopefully there is a surgical procedure and Dr who can help you if you keep searching. Good Luck
    Grayslake, IL USA
  • Thanks I have been to so many doctors, just don't know what to do next..
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