Who to go to for Second Opinion?

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

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Who to go to for Second Opinion?

Postby mollieco » Sun Feb 13, 2011 2:58 am

Hello everyone,

We're an American family currently living in the Middle East. Our 8-year-old son Rory has had severe back pain, no growth in height, and an oddly straightened spine (no lordotic curve) for over a year which became much worse over the summer to the point where he could not walk in the afternoons. I had to beg several hospitals before an MRI was ordered. The MRI shows several syrinxes running almost the entire length of his spinal cord. We were told to come back for a 6-month follow-up MRI. We were also told there is no chiari though I'm not 100% certain that I believe that. They did an MRI with contrast to rule out spinal tumor.

We do not have access to a pediatric neurosurgeon here. The adult neurosurgeon here says that our son probably doesn't require surgery but that yearly MRIs to keep an eye on his progress will be enough and we'll discuss surgery if and when he has difficulty walking. From what I've read, perhaps it's not the best strategy to wait until there are worse neurological problems. (He already has some neurological deficits.)

My question to all of you who live in the US is who should I send his MRI films to for a second opinion? I have read good things about Dr. Frim in Chicago and Dr. Ellenbogen in Seattle. Since we're in Saudi Arabia, we can literally fly to any city in the US. If surgery is recommended, we will proceed with that in the US. Is there some other doctor out there that I'm missing or don't know about who would offer a good opinion? I'd appreciate knowing about good or bad experiences with Frim and Ellenbogen, as well. We are so lost that we may even seek opinions from three surgeons at different hospitals in the US.

Thank you for your help. I feel very lost here.

- Mollie
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Re: Who to go to for Second Opinion?

Postby razzle » Sun Feb 13, 2011 4:39 am

there is Dr. Jerry Oakes in Alabama excellant childrens NS
And Dr Arnold Menenez in Iowa city , Iowa for children
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Who to go to for Second Opinion?

Postby lcolangelo » Tue Feb 15, 2011 11:31 am

We are from ny and go to Iowa City Iowa to see Dr. Arnold Menezes. He is one of the best in the world!
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Re: Who to go to for Second Opinion?

Postby mollieco » Wed Feb 16, 2011 11:48 am

Thank you very much for the replies :) I will look into these docs, too. I had come across the name Menezes but for some reason thought he was for adults. Thanks.
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Re: Who to go to for Second Opinion?

Postby razzle » Wed Feb 16, 2011 11:52 am

Dr. Menenez sees both . Make sure you ask for him or they will put you with another NS. If your NS there calls have him request Dr.Menenez and him only.R
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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Re: Who to go to for Second Opinion?

Postby memom » Wed Feb 16, 2011 4:56 pm

We are very happy with Dr. Robert F. Keating at Children's National Hospital in Washington, D.C. Good luck and keep us posted on your progress.

Lauri
Mother of a beautiful 9 year old girl with CM 1.5, SM T 5-8 and Hypermobility. Decompressed 7/09.
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