Chiari Malformation Problem Becoming Worse- New to this
 

About 4 years ago I began having some problems and began the process of MRI's and different doctors and tests. I was diagnosed with Trigeminal Neualgia and Narcolepsy. The doctors also found a syrinx of 11mm at my C6-C7. It was noted then (I didn't know it) that I had low lying cerebellar tonsils. In the past few months I began having extremely bad headaches in the back, lower part of my head, near the top of my neck, I've also been experiencing nausea so much I took a pregnancy test to be sure that wasn't why! I've also had problems with numbness and tingling in my extremities. Plus more of the symptoms associated with ACM. My recent MRI (last week) noted the cerebellar tonsils at 6mm below. My recent call from the nurse said basically it all looked the same from my last MRI and I should see my neurologist about migraines. I told her I had experienced migraines in the past and this wasn't the same thing. I am concerned because he's not even addressing the ACM and she said they don't do anything til it's beyond 8mm. I don't want surgery, but I do want some relief from my symptoms to be able to get back to my every day life. I'm not sure whether to seek a second opinion or not. I wonder if extreme fatigue and facial pain (diagnosed as TN) could be associated with the ACM and if surgery would fix everything. I have a follow up appt next week with my NS and am trying to prepare my questions for him. I am currently on neurontin and carbatrol. Any suggestions?

I suggest u look for a second opinion before it is too late, the more you let it go the damage can be worse, i don't mean to scare u but is your health ur talking about, I started with the numbing, then pain and more pain until it was unbearable, was diagnosed with acm and syrinx and had the decompression but the nerve damage was irreversible, best of lucks and hope this helps u :)

Wow, you are one tough cookie! I finally found a great neurosurgeon, keep looking till you find one who listens. I myself am using a cervical foam collar at my doctors prescription. It definitely has helped. I see that some have posted they are worried about the muscles getting weaker using a collar. My doctor also prescribed isometric exercises to strengthen the neck muscles and stretch the back. I have to say I have gained back a quality of life--and that's without surgery! I may need it in the future, but for now I'm very happy with the progress I've made. Also, for pain management, I have found that working on inflammation has definitely helped. Ask you doctor if you can have quinine, tonic water. And the mediterranean diet is anti-inflammation. It definitely cut down on headaches, back/neck pain, etc.