Chiari Online Support Group

Tired of going through this!

I've been in the hospital for 4 days with hydrocephalus and I still can't get clear answers from my neurologist. When I went in to get the Lumbar Puncture or spinal tap they told me that they saw on my MRI that I had Chiari so I asked him do you think this is what caused me to have too much fluid in my brain he said it's a possibility but my freaking Neurologist said Chiari doesn't give you headaches!!! I am raging mad because he doesn't want to diagnosis me just continue pushing all these different meds on me and saying I have chronic migranes. It really makes me feel like something is wrong with me mentally. I have these constant dizzy spells along with ringing in my ears and a headache I even told the man that when I sing my head feels like it's going to explode. I am at a lost here this is neurologist #3

Marie I went threw this after I had my surgery. My doctor said that was nothing wrong with me. I had this pain in my head that was so bad it was pressure in my ears when I talked it hurt. I went threw 3 Nero doctors to and no one would listen to me. I am going to tell u don’t give up there are doctors out there that will help u. I have one now they found out I have a syrinx that is putting
pressure on nerves in my spinal cord. This will be my 5th surgery so I can tell u don’t ever give up. Doctors will try to tell u things sometimes to make u think u are crazy. Trust me I really thought I was but trust yourself if u hurt u know u hurt. Good luck I will be praying for u!

Hi, Marie. I am sorry you are frustrated and in pain. If you don’t feel your neurologist is a fit, it seems you may need to find another.

Good luck. I hope you get answers soon.


Thank you both Debra Mann Davis and BaltimoreBaby. I really appreciate the comments and advice. I went back to the nero today and I asked them again about the chiari and they told me that it's not causes my symptoms and offered me botox which I refused also shots of immitrex that I can administer myself. I leave in pain and confused again so the search continues for someone who will give me clear answers and help me deal with this chronic pain because being in pain every day can have an effect on one's psyche.

Marie I am a CM1 patient and yes my chiari does cause massive headaches. They are never constint in pain or in duration but I always have a dull ache.
there are a few great places to check into. Wisconsin Chiari Center, Mayo Clinic, and Chiari Institute. I had my last surgery in Wisconsin with dr Heffez but now im needed more help and he said there is nothing more he can do so im checking the other 2. Just filln out questionairs and collecting my latest MRIs. I hope maybe they will have diffrent options for me