Chiari 1 malformation experiences

Hello,

I found your forum through a "Google" search. I have a blog with my personal Chiari surgeries experience in one entry, along with MRI and CT scan pictures. The rest of my blog is kind of a reference library of links to information about Chiari that you may find very helpful. Here is the link if you would like to check it out: http://christineschiariblog.blogspot.com/

Best wishes!!

Christine from WI

cmschultz@new.rr.com

Thank you for your response. I have dug up quite a few of those links in the last 48 hours (who needs sleep!).

This is for my daughter, who was just diagnosed Wednesday 7/16 via an MRI scan that she has a 25mm to 30mm "tonsil" past the foramen magnum. Needless to say her mother and I are worried, and researching like crazy.

The question at this point is whether to operate or not.

There are several site you can visit for info

www.asap.org

CCI

The most importnt thing is to find a dr. that is a expert . There are several Pediactri NS . dR. mENENZ IN Iowa , Dr/. Frim in Chicago , Dr. Oakes in Alabama . good luck .

HERE IS CCI LINK

http://www.chiariconnectioninternational.com/

just google the word and you wil lfind many sites

I haven't hit the first site yet (asap.org), but have gotten a lot of info including a list of doctors from http://www.chiariconnectioninternational.com/.

Thanks for the info, I will check out the asap.org site next.

My daughter (15 yrs old) was diagnosed about two years ago. Fortunately it was not severe, and as she has grown the symptoms have diminished. Our doctor suggested a wait and see approach and so far that has been good advice, she seems to be growing out of it to some extent.

That is where we are at: Can the symptoms be handled with meds like Topamax, or will they get worse and cause permanent damage. Will doing the surgery "fix" the problem, or will it only cause further damage.

There seem to differing opinions about whether the "tonsils" should be tucked back where they belong, or clipped/cauterized. The other thing is whether a shunt would be required. What I have read so far indicates that it is a major source of repeated problems.

I have Chiari and have done a lot of research on the subject and those diseases surrounding chiari. You can e-mail me for more info or check out my blog ~

http://livelovelaugh-lace1013.blogspot.com/

Thanks for your response. If surgery is needed, I think the link to the "Discovery Health Chiari Special" will be the opening conversation with our daughter.

P.S. I'm gonna use that "I bite your face" quote!

Dont wait to long . Do you have Syringomyelia too , the 2 usually go hand in hand .

There was no evidence of Syringomyelia on the MRI (it was specifically stated in the radiologists report).

As is usual with Chiari patients, it wasn't that the neurologist was specifically looking for a Chiari malformation/Syringomyelia, but it was picked up by the radiologist when the neurologist ordered the MRI "just in case". She has been going to the neurologist for a year now, been put on Topamax then Gabapentin (Neurontin), but just wasn't getting the kind of relief from headaches/migraines that he expected. So he ordered the MRI to rule out some injury.

We already have a an appointment to see a neurosurgeon on 8/1, but we will have to judge from there who does the surgery if needed. Amongst other things, I think a good study of the CSF flow needs to be done.

Chiari surgery is just a temporary fix. And once you have been diax you do not need a Neurologist you need a neurosurgeon . where do you live ? They are all over the US .

Southwest U.S. so we are leaning toward going to Dr. Oro if surgery is needed.

Why do you say that "Chiari surgery is just a temporary fix."?

Because it can grow back I suppose . well I should say My Dr. says mine is fixed , but everybody else you talk to says its temporary . and I have seen several that have had 2 and 3 surgeries . I think its the Dr. doing it . thats why you need a expert. Roz