Chiari Online Support Group

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#1

I moved the panhandle of Florida and I am struggling with the right drs. The one Neurologist says he is well aware of chiari and then was using a business card to measure chiari, in fact, he told me I didn’t have it at one point. My case is very odd where my tonsils bounce up and down. I started at a 6mm but after the use of medicine it has I guess relaxed it and the tonsils jumped back up. I see Dr Trumble who is wonderful and only gives me a 50/50 chance after surgery for my symptoms to get better so I didn’t want to take that route. Now that my tonsils are back up for now, there is no need for surgery BUT I am still facing all over pain, strain on my neck for sitting up right or standing, someone feels like they are pushing my head down at all times, migraines which I control with botox, fatigue, can’t seem to find the words, major dizziness, and the list goes on. This new neurologist pushed me to pain management that wants to stick more needles in me with shots and procedures that I have already been through before, but wants to try again. The last time they did all of their work, I ended up not being able to walk and my si joint went out on me. I need to find an advocate for me over here, I now wish I never moved away from my drs over on the east coast :frowning: