Last post Sun, Aug 10 2008 9:05 PM by Dodie. 12 replies.
Just wondering if anyone else here may have this?
My daughter and my daddy have it.
It's affected my daddy's motor skills and memory.
My daughter has very bad headahes and her memory has started fading since her wreck earlier this year.
I was wanting to ask if anyone here has this medical condition and what you're having done about it.
Thanks for any help or suggestions
Hey Dodie! Welcome to Disaboom. Sorry, I don't have chairi. I am an amputee. Just wanted to say hello and welcome. I'm sure someone will be along who has it too. Good luck to you.
Becky
SORRY I DON'T , I WELCOME YOU AND HOPE YOU FIND SOME INFORMATION YOUR LOOKING ! RAINEY XO
Thank you all for your welcome.
The only place here at the site that I've posted before was at the Limb-Girdle Muscular Dystrophy section.
I hope someone can tell me more about this condition.
Thanks for the welcome.
I had never heard of this either until my 18yr. old daughter had a head-on collision earlier this year and it showed up on her MRI. Then my mama told me that my daddy had it too.
I'm going to try and find all the information on this that I can.
I'm sure I'll get some help sooner or later.
Thanks again
Hi Dodie, I'm another one who can't tell you anything. However, I do welcome you to Disaboom. I'm going to look this up too! I've never heard of it.
Beblessed,
pambe
Hey Dodie, I went ahead and read up on Chiari. I have MS, so i'm not much help, except with MS I get lots of Migraines. They hurt so much and can be so debilitating. If your girl is having pain on that level I would really look for a good Neurologist and consider the options for surgery that opens the channel for fluid to pass between brain and spine. This is circulatory system of it's own encased inside a membrane. If her cerebellum is pressing against the area where that fluid passes from the brain to releive pressure it sounds like this could cause more than pain. You know this already, I'm sure. I'll have her in my thoughts and prayers. I would act on this asap though.
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
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!
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
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.
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.
