I was diagnosed on aug.12 of this year. & I didnt have any questions really answered for me except, what medicine they were going to try me on first, and the now obvious (why i was getting headaches)I go back to see a neurosurgeon on the 27th, but my mind is just going nuts, i cant stop thinking about all of these questions i have. Heres just a few… When people ask me what chiari is, i explain to them the cerebellum shape & my headaches & other symptoms, but then they want to know if its like a disease or a neurological disorder? I would also like to know. & how long do people generally wait to decide to try a different medication or do the surgery? I really dont like taking a MINIMUM of 4 pills a day, i dont want to be tied down to pills for the rest of my life. -Kalyn
My NS told me Chiari is a neurological disorder and that in order to stop(hopefully) the progression of symptoms and restore CSF flow an operatin must be done...Posterior Fossa Decompression....I had my done 3 yrs ago with positive results..still have some issues but I am better than I was.
Good luck on the 27th and keep us updated.
Chiari Malformation is a neurological disorder.
As far as medication and or surgery that all depends on your symptoms and your neurosurgeons.
This is all very hard to understand and go through!
Check out the Resources page at the top. There are a few sites and books listed that may help you:)
Also if you have more questions please feel free to ask:)
to add to what Alicia said...I personal love the site www.conquerchiari.org tons of info and I also recommend the book..
Contents Under Pressure by Ray D'Alonzo...wish I had read it before surgery...wish i had had family members read it too!!!