Chiari Malformation I

monaz · Post by **monaz** » Thu Nov 13, 2008 4:49 am

I was just told a couple of weeks ago I have Chiari Malformation I. I was wondering if anyone has this and what treatment they have recieved. My Neurologist put me on Topamax 25 mg which caused the dizziness, headaches,not being able to focus to get worse.
I don't know much about this disorder who would love some insight.

monty'smom · Post by **monty'smom** » Thu Nov 13, 2008 5:18 am

Hi Monaz,

There is a lot of what appears to be good info on this condition at this site. You may already know all this info but check it out and see for yourself.
Good Luck!!

<A HREF="http://www.healthofchildren.com/C/Chiar ... ation.html" TARGET=_blank>http://www.healthofchildren.com/C/Chiar ... on.html</A>

monaz · Post by **monaz** » Sat Nov 15, 2008 5:46 am

Thank you so much for you help. After going to the web site you provide, I found a web site where people with this malformation talk with each other. It is great to know that I can ask questions and get a better understanding of it.
Thank you so much.

monty'smom · Post by **monty'smom** » Sat Nov 15, 2008 6:15 am

Happy it was so usefull for you monaz!!

Good Luck To You

Robinjune · Post by **Robinjune** » Sat Nov 15, 2008 6:26 am

:p Hi monaz,
I to have ACM1. I had three surgeries done. I dropped to 8 mm by the time they found it and the headaches were very painful. I have found that being very careful on which doctor you choose is a key to a good out come. Do your home work before any surgeries. If you are 5mm and under the medication may work. I can't tell you enough to be very picky on which doctor you go with. This is so important. Make sure you find out how many ACM patience he or she has worked with. Back ground checks etc. So please be careful! I wish you the best.
Robin

restingrace · Post by **restingrace** » Sun Feb 08, 2009 7:01 am

Hello, it's been awhile since I have posted here. I have a daughter with Chiari and one with Syringomyelia which generally goes along with it. What I can tell you for sure is what someone else has posted, be very careful with doctors. My girls see Dr. David Frim, University of Chicago. I myself have been diagnosed with Fibromyalgia but am now questioning Chiari as well. I get dizzy when I lay flat. I have headaches a lot, especially when I lay a certain way on my neck while sleeping. It is a scary disorder, but they are making many new advances. Check out <A HREF="http://www.ASAP.com" TARGET=_blank>www.ASAP.com</A>. Great place to be. Great people to talk to. Let them know Grace and Emi said Hi and that we miss them much!!