Welcome to Discussions

Posted on: Mon, Jul 21 2008 1:24 AM

Posted by: txstreetbob2006 Posts: 2

Hey Dodie,

I have had a couple of brain surgeries and some illnesses that have caused me some issues and symptoms which are nuerologically related.  It was thought for a short while that I had Chiari and I went through quite a bit of testing and a number of doctors before it was finally ruled out.  You see I have a number of symptoms which mirror closely those of Chiari but even though it was ruled out, they stated that the treatment for Chiari was the same as that which I was already undergoing.  I was told that it all depended on how severe and which type of Chiari a patient has however in my case it would have been a mild case which they stated they would rather intervene in medically prior to embarking on a surgical intervention (in other words they wanted to treat me with medications first).  They claimed the medication of choice IN MY CASE (mind you I am not a doctor and can't recommend any treatment) was Diamox which they would try for quite some time slowly and safely increasing the dose steadily until I was at the highest safe dose for some time prior to deciding on the very extensive, and rather risky surgical alternatives which would of course be the last resort.  My only advise is too find a good, no scratch that, a great neurologist and neuro-surgeon and trust, hope, and pray -- if that's your thing.  I guess to some extent I got lucky on that one (since they ruled it out) but that also means that they still don't know what is increasing the pressure in my brain, so the search goes on.  I hope I have been of some help. I know it's hard to find others, the disorder from what I understand is very rare.  Good Luck.

 Sincerely,

txstreetbob2006

Posted on: Mon, Jul 21 2008 11:45 AM

Posted by: DavidZ Posts: 150

I don't know anything more about Chiari than I could find by Googling it.  But I agree that someone here is likely to be able to help you.  Welcome to Disaboom!

Posted on: Mon, Jul 21 2008 4:23 PM

Posted by: sandyfreytag Posts: 1,095

Hi, Welcome to Disaboom! I am like David. I only know what I found out about it on Google. How ever there has to be someone here at Disaboom that can help you. Take Care Now, Sandy

Posted on: Sat, Aug 9 2008 3:53 AM

Posted by: Debbie Posts: 3,829

hi dodie and bcstreetbob sorry that the both of you are going through a scary time right now.  i'm glad you are here and i wish you the best in finding the problems and recover fast. it is nice to meet you and welcome.

Posted on: Sun, Aug 10 2008 9:05 PM

Posted by: Dodie Posts: 12

Sorry I've been a while replying, but my last chemo treatment kicked my butt.

Thank You all for your replies. And Thank You all for your welcomes.

I'm hoping to get some answers about Chiari soon.