Chiari I Brain Malformation

This is a difficult journey for you and your daughter. Every state has a Parent Training and Information Center, the one in Arkansas is:
Arkansas Disability Coalition
1123 S. University Avenue, Suite 225
Little Rock , AR , 72204-1605
(800) 223-1330 (V/TTY)
###-###-#### (V/TTY)

http://www.adcpti.org/pti.php
http://nichcy.org/state-organizations-search-by-state-res...

They would be very happy to help you out with locating resources. Please give them a call. Good luck to your family, knowledge is power!

Check out this site. It is actually located in Longview, TX
http://www.asap.org/
I discovered them a couple of years ago when 32 yrs old I was diagnosed with syringomyelia. I had to educate myself since most the base and local doctors had only heard about the condition and never dealt with it.

I have a friend who is 27 and went for years and years with no answers. She recently got the news that it's chiari and she is having brain surgery in 2 days. So, no personal info but she says it's crazy how often it goes undiagnosed!

I will pray for you and your little girl and your family. Please keep us updated and I totally agree with you going to NY. So sorry.

I am sorry that you have such a long road to just get the diagnosis. And I am very happy to hear that you are going to an institute just for this issue.

I was going to say that your daughter is fortunate that it is the most common malformation, meaning Type 1 Chiari. But if her symptoms are worsening, that is concerning. If there is paralysis, it seldom reverses. There are medications that can ease symptoms. Is she taking anything at the moment?

How soon do you leave? Surgery is very effective for this type of malformation.

You are right that doctors outside an academic hospital might not be as up on this problem. But it is often caught on regular exams, due to the common occurrence of imbalance issues.

I don't know anyone with this problem, I just hear about it through my hubs.

Best of luck! I hope she is better soon.

I found this at Mayo Clinic and they have hospitals in different states so you might check with them also.
http://www.mayoclinic.com/health/chiari-malformation/DS00839

http://mayoclinichealthsystem.org/?pp=locations/stateinde...

I know someone who was diagnosed with this and they had surgery to widen the small soft spot at the base of the back of their head/skull where your spine goes to the head/brain. From what they told us, the spinal fluid was not flowing as freely as it needed and causing very bad headaches and a number of other medical problems. They were glad it got diagnosed properly. The surgery definitely helped and was a much easier recovery than any of us thought. They traveled to Birmingham, AL Children's Hospital for an pediatric neurosurgeon for what they said "one of the best in the country doctors who had studied this problem." They considered going to NY and possible another location too. They are continuing to see improvements. Prayers for you and your daughter!

I'm so glad these posts, these people gave you good answers/ information. What a caring group.

I'm so sorry to hear about your daughter. I just checked into it since I've never heard of it before. This is a tough thing to deal with. My heart goes out to her and you and your family. Stay strong.

Sending prayers for her.