I was diagnosed with an 8mm Chiari malformation in April 2007 and I had surgery in May of 2007. I had what was called a cranial decompression with a facial lata-graph. I was okay for a couple of months after the surgery but now my symptoms are back, worse and some new. I have since seen a neurologist whom I did not care for. I feel like people think I am making it up. I have learned to live with the headaches, neck pain, cold hands and feet as well as other frequently occuring symptoms. Should I try to see a specialist? Go back to my neurosurgeon? I am at a loss and would really appreciate some help. Thank you!
I really do feel that the surgery failed and even though I really liked my NS, he is not a chiari specialist. I have been checked for syrinx but they said they did not see one. I thought that maybe that's what was going on because of the symptoms I was having but an MRI said otherwise. When I went back to my primary physician, he said that I didnt need to go back to my NS but to a neurologist, whom I really did not care for. They wanted to put me on Lyrica, a sleeping pill and physical therapy. After I got my staples out after surgery, I have not been monitored other than me seeing my physician several times for new and worsening symptoms. What to do now?
Before & after my surgery (Jan 2009) I never met with my PCP. I saw my NS two weeks after, five weeks after, nine weeks after, three months after, six months after. Then I was given the "all-clear" and told I didn't need to go back and see him unless I was having issues. He said I need to have MRI's every six months and that I could come see him to review those or they could just send him the CD's to review. I did just e-mail with him. He is about 1.5 hours from where I live.
I don't have an NL, but maybe I should get one. And I haven't seen my PCP in like two years.
The NS that did my surgery was my 2nd opinion, but really the doctor I wanted to see because he is a "specialist". I saw one NS locally, then asked to be referred to Dr. Won. He is actually a pedatric NS, but see adults and does about 4 Chiari surgeries a month. It can't hurt to see a specialist.
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