Any advice would be appreciated.
I had my Chiari surgery 8/12/2013 - main reason was I was stopping breathing in my sleep. I had the bad headaches and eye pain and back and neck pain but the breathing was the main reason I did it.
I had neck surgery 9/17/2014- I waited to see if the Chiari would help take the pressure off my spine but it did not and I ended up with terrible pain in my arms and hands. The deciding factor for this surgery was I started to wake up and could not move either arm and I freaked out.
The problem I'm having is a few months back the Chiari pressure and headaches have come back and it is making me real nervous that it will all come back. I sometimes get the old feeling of breathing problems.
I dont want to go back to my Dr who did the Chiari because he doenst seem to listen - My neck dr doesnt treat Chiari. I'm going to see a nerve DR to see if they can help. Part of me wants to bury my head in the sand and maybe this will go away but the other part is so worried Im going to have to have another surgery. My poor family has been through enough and I just dont want to tell them how bad Im hurting again.
Any suggestions would be great
Thank you so much for this information
I've read back through your other two discussions, did you have fusion of C6-C7 then for your neck surgery?
I think being evaluated for craniocervical instability and intracranial hypertension may clarify what the problem is. If you have craniocervical instability, then the top bone of your spine is wobbly, and the ligaments are not holding it in place. This can cause brainstem compression.
If you have intracranial hypertension, then your body produces too much, or doesn't absorb enough CSF.
CCI needs to be evaluated by a neurosurgeon familiar with it, and I haven't heard of one in California which does that. The closest I am aware of is Dr. Nicholas Theodore in Arizona, or Dr. Douglas Brockmeyer in Utah.
Intracranial hypertension can be evaluated by an opthamologist...they are checking for papilledema or loss of retinal vein pulsation.
If you have CCI, a skull to C1 fusion should fix the problem.
If you have intracranial hypertension, then there are medications which help the majority of patients, but some patients end up needing a shunt.
If you have to stay within California due to travel or financial restrictions, you could check with Dr. William Bradley, a radiologist, to see if he can evaluate your current MRIs for instability. Here is his information:
http://doctors.ucsd.edu/Details/11516. He is one of the doctors involved in a recent symposium for craniocervical syndrome, back in 2013, here is the video:
If he cannot help you, he may be able to direct you to a neurosurgeon in Calfornia who deals with CCI (or CCS as he may refer to it).
Is the instability be a reason of feeling of tension in the shoulders and neck? I feel like I keep my shoulders tense and up.