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-   -   Q's about Chiari Type I (https://www.neurotalk.org/children-s-health/196245-qs-chiari-type.html)

Cochran820 10-25-2013 02:39 PM

Q's about Chiari Type I
 
My daughter, age 7, has been suffering from migraines since she was about 2 years old. Her pediatrician wasn't too concern, but in September we decided to finally see a neurologist. At her first consultation, the Neurologist wasn't too worried b/c there is no history of any other worst case scenarios in our family and said everyone gets migraines; but we still moved forward with an MRI.

MRI came back showing that she has a 5mm cerebral ectopia. Her spinal fluid levels are fine, there is not blockage as a result of this ectopia. He said this was more of a Sub-Clinical Chiari from a Radiological perspective. Said she is a borderline Type 1 chiari. He doesn't attribute her migraines to this Chiari. He doesn't think it's necessary to f/u with yearly MRIs. Said that often times, the ectopia will fit into place as her body continues to grow. Maybe in a year or 2, she will be a 4...or 20 years from now she will remain a 5. He is certain that this ectopia will never increase from a 5.

Prior to this week, I had never even heard of Chiari. I'm trying to do my own research, but I'm just confusing myself even more. I think I want a second opinion. But does anyone else feel confident in my neurologist's findings?

I'm just concerned that my daughter will be affected by this in the future..Is it possible for her to be fine one day and then have symptoms in the future? Will any form of head trauma cause this to get worse? Why do some people never have symptoms and then as adult, the symptoms begin?

Overall she is healthy as can be. Never had any other symptoms related to chiari.

Any insight is greatly appreciated.

Raigne 04-10-2014 07:46 PM

I know this is an old post. My only hope is that the original poster will get an email showing a response.

FIND A NEW NEURO.

I didn't get diagnosed until I was 38 and I'd spent a lifetime of pain, pain and more pain. Even a small Chiari blockage can cause an individual a great deal of pain. Some people have it and aren't symptomatic. Others, like me, are very, very symptomatic. I also formed a syrinx (Syringomyelia) from having the ACM1 which destroyed part of my spinal cord and made any pain I had about a 1000 x worse.

I pray you have found her another neuro that will take this more seriously. A child that young shouldn't have to deal with such pain in this day and age of advanced medicine. www.asap.org is a great resource for Arnold Chiari Malformation and Syringomyelia.


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