Need Some Advice - Sullivan, OH

Does your daughter who had surgery have an ACM 1? Duke University was doing tests years ago, and probably still are, to see if there is a genetic link to ACMs.

I had an ACM 1. I won't go into all of the details here, but feel free to e-mail me if you are interested. Anyway, after several years of a variety of treatments, I finally had to have surgery in 2001 due to blacking out. I was 33 yrs. old and the mother of two small children. Then, in 2004, I had to have a second surgery for a VP shunt insertion. Though neither was without complications, at the age of almost 41, I am doing GREAT and even had my third baby in between the two surgeries.

Please feel free to e-mail me. My story is somewhat different since I dealt with the surgeries as an adult, but I may be able to provide some input.

My grandson had surgery for Chiari this summer. His mom set up a Caring Bridge site that followed his progress. She also has other sites listed that has info about it. I will try to attach a link to his site. If it doesn't work, let me know and I'll ask her permission to give you her email address.

http://www.caringbridge.org/visit/keegantutrow

He is progressing very well at the present time. There is info out there and people to talk with.

www.merck.com they have just about every little thing out there known to man. good luck & God bless.

Hi T.,

My 39-yr-old friend was just diagnosed w/ Chiari type-1. 5mm of the lower brain is protruding into her spinal column. This is something she was born with, but the symptoms recently just began to present themselves (numbness of hands, arms and head occasionally, and frequent dizziness.) From what she told me, this is typical. It is seen most frequetly in females, and they usually aren't bothered by symptoms until adulthood. She has lived a very normal healthly life (served in Persian Gulf, college, marriage, children, fulfilling church, on and on.) Currently she is treating this w/ meds only and her dr feels surgery should be a last resort. Of course this is with an adult diagnosis, so I don't know if correcting this as a child would have benefits perhaps? My friend feels somewhat stuck, scared of surgery, but does not like the symptoms.

I hope this helped and did not scare you.

Peace,
K.

Hi, T. -

I have friends whose daughter made very little developmental progress related to speech. After consulting a number of doctors, they determined that she had Chiari malformation and had surgery when she was about 3, I believe. Since that time, she's progressed - though I believe they still feel she's got some developmental limitations.

I don't know anymore than this, but I could try to put you in touch with the parents, if you're interested.

Just let me know, and we can take it offline.

Take care,
H.

It is likely they are thinking it may be hereditary and want to rule it out. We deal with ACM II so ours is a bit different. My son has spina bifida and this is a common result. I don't know the differences so I can't offer med. advice, but know there are many great neurosurgeon's in Indy. Best of luck to you.