Good morning. I am a new member with history of Chiari decompression and C1 laminectomy, 2010 and revision of both 2011. I initially had a host of symptoms, as you all do, and then recurrence of symptoms approximately 6 months after the first surgery. The second surgery was open dura with placement of titanium mesh plate with muscle graft in Colorado with Dr. Oro (amazing person). I am posting today, because I have been having more recurrent symptoms, but slightly different than before. I am very bobbly…head and body, specifically in the morning (I sleep on my side and belly sometimes) and with certain head movements. I do have pressure at the base of the skull and neck pain. Both symptoms seem worse upon standing after sitting and looking down at my desk at work. I am a high energy person, very busy with work and kids at home. Saw a new neurologist in Florida 3 weeks ago who indicated symptoms could be because of scar tissue. MRI showed no new changes since post-op scan 6/2013. Sorry for the lengthy post, but I wanted to give some background. My question is whether or not these symptoms seem to be consistent with those that have had a lot of cervical instability. Also, how is this treated? My neurologist suggested I resume my post-op PT exercises for balance. I see him tomorrow and would like to guide him as much as I can and determine whether or not I should fly back to Colorado for re-consultation with my neurosurgeon and/or for flexion/extension/standing MRIs. Thank you.
Hi Julie, welcome. I had CCI that was fused a few months ago. I too had a decompression with re-occurring symptoms. I had the flex/ext C-spine MRI done and then took them to a Chiari surgeon who also fixes CCI.
Here I are some great videos about CCI
Csfinfo.org
Videos
Metropolitan area
Watch everything relating cranio cervical instability/EDS
Not all NSs and radiologist understand CCI, so that makes it a challenge to get diagnosed and fixed. The surgeon who did my decompression had no interest in CCI (I just think he didn’t have experience in area).The surgery for CCI is usually a cranial cervical fusion, and depending on the severity and type of CCI, an odontoidectomy.
Jenn 
Thank you so much for your reply. In your experience, what symptoms did you have after decompression that lead to diagnosis of CCI and do my symptoms seem similar?
Julie my symptoms were the same as the Chiari symptoms. After decompression I had a little relief of the headach initially, but then it came back + some. I acquired dysautonomia after the decompression too. Duzziness, memory, balance, GI, but the headache was the worst. I think you know if something is wrong…everybody’s symptoms are different, even for CCI. How did you find out /hear about CCI? Just curious…
I have done a lot of research over the last 5 years, so I have come across craniocervical instability a few times with my sympoms. I am scheduled to see my neurosurgeon early March. He reviewed my recent MRI and said the decompression itself looks okay. He is recommending flexion/extension CT of cervical spine and a spinal tap to rule out intracranial hypertension. Does this seem consistent with other tests people have for CCI? Also, if it is CCI, do those of you that have it experience more problems with weather changes? I am very bobbly with rain and cloud coverage. Thank you for all of your input.
Julie, the flex ext CT sounds appropriate. My NS also ordered CTs of my head turned all the way to the right and all the way to left. Wearing a collar before my fusion was a life saver for me, I don’t think I would been functioning at all with out it. I’m glad you are getting in with an NS who understands CCI. I think most of us would be singing a different tune if all NSs understood it.
Jenn