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Hi there
My 7 year old was rx'd with chiari malformation at age 5. So far we are in a wait and see situation. He has another mri next week as his headaches are back more often, his throat feels sick all the time, sleeplessness.
Did you see Extreme Makeover-Home Edition last night? A family in my town, Billings, Montana, has Chiari....the mom and 3 daughters. The show and the people of Billings built them a beautiful home. Mom (Julie Carter) advocates for people with this affliction all over the world. You might try calling her at Moderator cut: no posting phone numbers although her phone might be ringing off the hook since the show aired. I also know she has a website (may be the Chiari Foundation of Montana or something like that) that you could look at. Best wishes to you & your family!
Last edited by Suzet2262; 05-23-2008 at 04:36 AM..
I am trying to contact Julie Carter-I would like to sign up for her newsletter and encourage her to get a web site. My 31 year old daughter has been diagnosed with Chiari, but we don't have a support group that help us understand what to expect in the future. She has been undergoing testing for a year and a half....but we have not had an encouraging word from the doctors about how she is to live her day to day life.
Shadowrider, thanks for your help. She is finding out more and more info about this terrible illness. Her mood has lifted some because of the information that she has found. Learning about it gives her power,,,,,to overcome the fear that is involved in finding out you have something that no one else can understand.
I understand what your daughter is going through. I have also been dx'ed with Chhiari I, and have been attributing its symptoms to Meniere's Disease. I am 34. My NSG will now not listen to me, telling me that I'm just overreacting to the symptoms I've read about on the internet.
It's a congenital defect that usually goes undetected, unless it causes problems. A lot of times, they stumble upon it while looking for something else. In my case, though, once they saw it on the MRI, a lot of my little idiocyncracies that I've dealt with my whole life, and written off as "just me," now make perfect sense.
She should be very thankful to have a mom like you, who is out there stumping for information. Since the symptoms seem to be "invisible," I appear to my family to simply be milking the diagnosis and just being lazy. I look healthy, so I must be, right? Listen to her, and stand by her.
I just relocated a few months ago to a larger metro area, and just recently started having symptoms again. I'm hoping that I can find a good NSG down here... maybe one who will listen to me and give me some vindication, if not some relief.
God bless, my firend, and hang in there, Sounds like she's on the right path, and she's not alone.
Do not give up. You are not nuts, although CM1 really IS all in your head! Keep asking questions, keep looking for doctors who will at least consider CM1 as a reason for symptoms. I finally called the Chiari Institute in Long Island, NY and made the trip out there. It was worth every cent because finally someone understood and listened!! Join those groups above. they are invaluable.
Hello Dorothy,
My name is Brittney. I am 16 years old and I have Chiari Malformation. I was diagnosed with Chiari Malformation in July of 2007 and I had surgery on Augest 31st of 2007 so it will be a year since I had it in a few weeks. -I saw your post and just found it interesting because before I had this I had never even heard of it and now I have found quite a few people with it. I just thought it would be kind of nice to talk to someone about your experience with it.
What do the doctors want to do about your son's case? Does he have type 1 or type 2?
I'm 22 and was just diagnosed with having a chiari malformation... I know how frustrating it is to wait! I had seizures when I was your son's age (probably due to the chiari that nobody thought to look for), and I know how difficult it is for the child in that situation, with tests you don't understand and drugs that make you tired all the time. The best thing you can do is be proactive about the situation; read up on all the reputable sources you can find, and if your son is having an extremely bad day, take him into the ER. Doctors can't accurately judge the severity of symptoms, because on the random day of your appointment he may be feeling just fine. Best wishes for you and your son; remember, we are NOT alone in this!
I am having Chiari surgery next week and would like to know if it worked for you and how you handled the recovery. I have had daily symptoms for 6 years now and Johns Hopkins finally gave me some answers.
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Chiari
