new diagnosis

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

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new diagnosis

Postby momof5 » Tue Nov 20, 2007 3:33 am

Hi,

My 13 yr old daughter was just diagnosed with chiari1malformation and syringomyelia. The neurosurgeon wants to do surgery before Christmas. My question is does anyone in Southern California know of a good Dr to go to for a 2nd opinion? We are at Children Hospital Orange County and seeing Dr Louden. He told us that he does about 1-2 decompression surgeries per month. Does that give him enough experience?

Also he felt that my daughter would be able to go back to school after 2 weeks. Anyone have any input on that?

Any advice you can share would be greatly appreciated !
momof5
 

Postby brianfsmom » Tue Nov 20, 2007 6:43 am

Hi

I am just reading very quickly, but I know that UCLA has an excellent reputation. You can try googling it, or perhaps someone will post the name of the doctor here atfer me. You might be able to find the name on the recommended doctors list at wacma:

http://www.pressenter.com/~wacma/usdocs2.htm

There are other doctors who are very good, and are not on this list, ours included. But it is a good starting point.

Good luck!

edit: if he is telling the truth, he could do about 20 decompressions a year, how long has he been doing them? That is a reasonable amount, although some doctors do many more. I think there are only a handful who do huge volumes, others do about 15-20 a year and still have great outcomes.

And yes, after two weeks is not an unreasonable expectation. My son had a CSF leak and was back to school in three despite that.
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Postby Debster » Tue Nov 20, 2007 1:33 pm

I know someone personally that had decompression surgery by Dr. Batzdorf in Southern CA.

Although I have never seen him, I understand he is semi retired and is only available on a consultation basis. Which is a good thing because that means you might be able to get an appointment relatively soon since he isn't tied up in surgeries and the like. I think he used to be at UCLA, but I'm not sure.

Is there an urgency to your child's condition that it needs to be done prior to Christmas? I would think from a mom standpoint if it is possible you would want to wait until after Christmas to allow her to enjoy the holiday prior to surgery. Of course if she is declining and her health is in jeopardy, then that is of the utmost concern.

I'm in Northern CA. Pm me if I can help or you want to chat. I can always give you my phone number and we can talk by phone.

Deb
ACM Herniation 5 mm, Hypothyroid, Congenital Sphereocytosis, confirmed Raynaud's.
Some say the glass is half empty, others say the glass is half full, I say, "are you gonna drink that?"
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