Arnold Chiari Malformation Support Group

Diagnosed 2009 with Chiari I Malformation by MRI. I am 58 and would like to talk to others who have this. It is a struggle to cope with the vertigo, balance, migraines,fatigue, etc. My doctor does not want to do surgery and said he is treating people right now that have had the surgery and are no better or worse off after having it. People do not fully understand the struggles we have each day. They simply don't know what Chiari I Malformation does to your body. I would really like to talk to others for support who understand what we go through each day.

Post edited by: abbymoss, at: 05/18/2010 06:46 AM

I know what you are going through and have been there. However now symptom free I remember what it was like.

Stick in there and I am here to listen and provide support whenever anyone needs it. We all need to focus on the god things in life.

Hang in there!!!

Thank you, it means so much to be blessed by Chiari friends who can help us.

Hi Abby,

Welcome to the group! I'm so glad you're here.

I don't have regular Chiari, but have an aquired form - which causes the same symptoms. Surgery was recommended for me- after a surgery on a Tethered Cord condition, but I'm really glad I didn't have the opportunity to either sugery done. I have gotten a lot better over the last year- just from going off of the multiple meds that were causing my symptoms to be much worse.(Course, that doesn't mean I might have to seek out those surgeries at some later date!)

What are your most troubling symptoms? What other conditions do you have? (oh- is that the list below your name?- migraines and meniere's and vertigo?)

Remember- if you don't think your NS is making the right decision you always, always have the choice and right to seek out a second opinion- and I think you really should.

If you look at the page on this forum for Treatments you will find lots of resource pages that might come in handy. I'm thinking of the hints on how to live with Chiari-

Keep us posted on how you're doing*

All God's best to you,

prism

Hello friend,

I hope you've managed to run across some people to chat with about your Chiari by now~ and am so sorry that there doesn't seem to be any replies to your querry! There are several extremely active forums where you could get a lot of support and information if you go to the articles page (tabs above)

Chiari is a complicated condition to have and yes, can be Quite devastating- and while I admit your neurosurgeon is correct about surgery only helping some of the time, you always have the right to seek a second and third opinion. And it's my personal opinion that with something as serious as Chiari it's probably advisable to do so anyway. You want to have as much information as possible before you decide to let anybody cut you open, believe me!

Feel free to private me if you'd like to chat- and do be kind to yourself~

hugs,

prism