Chiari info needed! ( for aaa & jolie)

[aembuff]

Hi everybody, my friend has a 16 year old who was diagnosed with "mild" chiari 2 years ago. She has always been a a-b student... now she is getting daily headaches in the brainstem area and her grades have fallen while her studying has increased!

So Can chiari malformation progress? what are symptoms for concern (I think Daily head aches are concerning) what to expect at a neuro appt? mri, ct scan how is it confirmed or in this case re-confirmed/ investigated... Do you have advice or can you share an experience? as much detailas you ay have would be amazing and helpful... something just isn't adding up right and we think it should be looked at again.... thanks everyone!

[Debbied]

I think it can progress and it is my understanding that it is fairly common for symptoms to not show up until teen our early adult years..I am not sure where your friend lives but we had taken our son (although he does not have chiari) to see Dr. Frim a NS in Chicago he is an expert on Chiari and there is a short video of him discussing it here: http://www.uchicagokidshospital.org/specialties/neurosurgery/patient-stories/index.html

Wishing the best to your friend and her daughter..

[Ava's Mommy]

Hi there - my daughter has (or had?) mercedes benz craniosynostosis and a chiari malformation as a result.
She is only 9 months old, but the surgery didn't immediately correct the chiari so they are going to keep an eye on it.
I had no idea that this condition could progressively worsen (and I'm disappointed to hear that).
Please keep us posted and best wishes...

[josh'smommy]

What she is experiencing is a progression of symptoms which may or may not indicate a change in the degree of her herniation. My son's Chiari is 12 mm currently. Last Oct and 3 surgeries ago, he was 10 mm. So, I guess you could say that he has had a progression in the herniation although his symptoms have remained pretty constant from beginning to today. I know of other kids who have had no progression in the herniation but their symptoms have progressed. My understanding is that you really can't determine severity based on size of the herniation but rather the degree of symptomology.

The first neurology appt you can expect to have a full physical exam...reflexes, neuro function, eye response, etc...as well as a complete history. If there are films from a prior MRI, they will most likely look at them as well. Have your friend make a list of symptoms (what, how often, does anything make it better) and a list of questions. Sometimes things move so quickly that it is easy to forget those good questions!

While a CT can show a chiari malformation, the test of choice is generally an MRI. I know for Josh, they generally do an MRI of brain AND spine with a CINE flow study. That allows them to not only look at his brain herniation, but also check the flow of CSF and look for any signs of a syrinx forming. MRIs take a little longer than CT scans but I'm guessing that at 16, they would not need to sedate her for it. :-)

There are some medications they can try to help control the headaches without going the surgery route... a lot of the adults I've met with Chiari take Neurotin. But if her CSF is compromised or a syrinx has formed, surgery may be her only option.

My son has had 2 decompressions (including dural graft placement) and is now looking at a 3rd decompression as his symptoms have not resolved. If there's anything else I can help with, please let me know. I can direct you to some helpful websites and support groups for your friend as well!

Good luck to you guys!

[evergreenmom]

Chiari can progress and unfortunately I have heard of a number of teenagers severely afflicted by it. MRI with cerbral spinal fluid study is required for diagnosis but I have heard of cases where this was not conclusive but the patients eventually did need surgery and chiari was found in surgery. From what I have read on the chiari support groups it is imperative to seek out a chiari expert and not merely any neurosurgeon in your area. Some people have had terrible experiences requiring multiple surgeries or been brushed off by non experts only to have an expert take them seriously. Dr Frim was mentioned and I know he is highly regarded. There is a place in NY called The Chiari Institute- very well thought of. I believe I have also heard good things about Dr Ellenbogen here in Seattle if that helps but your friend should double check that to make sure. I suggest your friend research through the support forums- there are several- she should be able to find them via google but if she has trouble let me know and I will track them down. I posted a while ago under resources- it was some info on symptoms I found on one of the forums- check it out it's probably a page or two back by now. Wish your friend and her daughter good luck and keep us posted...