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View Full Version : New to Forum: 12 year old daughter has congenital kyphosis



sam_newyork
09-18-2006, 09:01 AM
Hello there,

I was thrilled to find this forum.

My 12 year daughter has congenital kyphosis. Two of her vertebrae are fused together in her lower back. Her curve is 24 degrees...although different surgeons have given me different measurements on her curve. The specialist we have been seeing for the last two years (Dr. David Bradford at UC-San Francisco) just announced his retirement. He has recommended Dr. Mohammad Diab at UC-San Francisco. Does anyone know Dr. Mohammad Diab at UC-San Francisco. We live in Upstate NY and making trips to San Francisco is rather expensive. I am wondering if any of you can recommend specialists in New York state. Any advice would be greatly appreciated.

Sam

Carmell
09-18-2006, 12:44 PM
Hi Sam,

There are several docs in your area that I would trust my child's life to. The Shriners facilities in Philly (my 1st choice) and Erie have lots of experience treating children with congenital kyphosis and other spine malformations. Others include Boston Children's (Drs. Emans and Hedequist et al), Dr. Boachie in NYC, Dr. Stephen Burke in NYC, etc. There are others, I'm sure, but I don't have them written down in front of me. I have an 11yr old son who was born with multiple congenital anomalies in his spine. I would trust my child to any of these docs.

Remember that no two patients are alike. You need to find the right surgeon, with the right recommendation, at the right time for your daughter. That's the part that's hard for us parents. You're doing a great job. Let us know what decide to do.

My best,

sam_newyork
09-19-2006, 07:00 AM
Hi Carmel,

Thanks for the suggestions. It sounds like we would be OK switching to a surgeon in NY. I will look up the names you mention and talk to our primary care provider about it.

The past 12 years have been really hard, trying to figure out what the right step is for her. Reading everyone's experiences in this forum was very reassuring.

Many thanks!

Sam