I had my follow up today and am so upset. All of the tests were normal and she said that there was no real constriction of flow so Chiari malformation was not the problem. Can Chiari malformation cause symptoms with out a cerebral flow constriction?
Have you considered CM0? I saw 52 specialists over a four year period until I found the right one. The the light bulb came on and the Hallelujah Choir sang. Please don't give up. Check out this link & if it describes your symptoms call your NL back and ask if he would like to treat you for CM0 or refer you to someone else. It's not hopeless I promise.
http://www.csfinfo.org/node/179
Tracy Z.
I have a diagnosis of Chiari malformation type 1. Until the last 6night weeks I have only had headaches, now I have a huge list of additional symptoms bur she says its not my Chiari malformation causing them BC my flow is OK.
From different articles I have read on CM0....Your CSf flow can be fine and you don't have Cerebral Tonsils or a Syrinx necessarily. Google CM0. You can still have symptoms maybe they misdiagnosed you some Dr's don't know anything about CM0. I just don't want you to feel hopeless. Is your NL a Chiari specialist? If she told you your symptoms weren't Chiari related did she tell you what was causing them?