New diagnosis California

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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New diagnosis California

Postby irieguin » Sat Jun 07, 2008 1:52 pm

My 11yo has just had syringomyelia seen on MRI. History of "migraines" since forever with increasing back pain for about 8 months. No trauma. Finally I freaked out on MD and they ordered and MRI. Repeat MRI with and without contrast does not show Chiari or tumor. It is in the thoracic/cervical area. A PT has seen scoliosis (I believe this to be relatively new since beginning of back pain complaint).

Where is best place in California to treat? I have an appt at Stanford next week (ped neurosurgeon). I live half-way between SF and LA so it makes no difference.

Comments

Thank

Irie
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Re: New diagnosis California

Postby brianfsmom » Sun Jun 08, 2008 7:11 pm

I am not in California (wrong coast!) but if I were I think I'd try UCLA first. I see their name pop up quite a bit on the chiari boards. Maybe someone else can pop in with a specific name.

good luck! Have you had an MRI that measures CSF flow to rule out chiari 0?
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Re: New diagnosis California

Postby irieguin » Tue Jun 10, 2008 8:53 am

Chiari 0 ? Hmmm... No, only seen a pediatrician so far. Guess I'll have to see how the Stanford appt goes. I'd rather go to Stanford than UCLA (driving-wise). It probably about the same distance but I hate LA traffic.

Thanks

Irie
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Re: New diagnosis California

Postby brianfsmom » Tue Jun 10, 2008 2:00 pm

I can certainly understand that re: traffic, but Dr. Batzdorf (I remembered his name) is one of the top chiari doctors in the country, and he is at UCLA. You have to be comfortable and trust whatever doctor you use, so if you have any doubts at Stanford, that's a name for you. Dr. Lazareff is the pediatric guy, I believe, also one of the best-known names in chiari.

In any event, I always think it's best to have more than one opinion when brain surgery is a consideration! Then just go with your gut feeling. Good luck...!
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