Who should we see for a second opinion?

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

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Who should we see for a second opinion?

Postby jupes » Mon Aug 17, 2009 11:11 am

As many of you know my 13yr old has a cervical syrinx and CM0. We already see a "well known" expert in IL and have been very satisfied. My only concern is that the last two MRI reports have mentioned a small narrow syrinx in the t5-t12 area which was never mentioned on her initial MRI report 1 1/2 yrs ago. Neither the NS or I see this but 2 different radiologists have consistently mentioned this and I am concerned this may be an early sign that her syrinx is growing.

Her symptoms are mild and would never consider surgery based on symptoms alone! She has developed some urinary issues and changes in spinal deformity over the past 8 months though. Looking for another expert (who believes in CM0) and is willing to review films by mail and offer a second opinion. Would be willing to travel but only to see someone who is "really" good and "believes" in CM0. Any of you ever consulted with Dr. Keating, Dr Oakes,Dr George, Dr Iskander, Dr Menezes,or Dr Oro by mail? Any advice/suggestions on these or other experts?

Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Who should we see for a second opinion?

Postby SamuelsMom » Tue Aug 18, 2009 9:25 pm

I just wanted to agree that I too would probably seek another opinion. Maybe just for peace of mind. I have read other post that Dr. Keating is easy to reach via email and you could communicate from a distance.
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Re: Who should we see for a second opinion?

Postby GrimeyGal » Wed Aug 19, 2009 5:14 am

Sorry, I can't offer any advice because we haven't had to do this yet but just want to wish you and your daughter luck. It is so hard to know what to do!

Keep us posted on how things turn out.

Patty
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Re: Who should we see for a second opinion?

Postby jupes » Wed Aug 19, 2009 11:26 am

Thanks for your response! Many of the specialist want to see you in person for a consult and travel is not an option at this point. I will check into Dr Keating and see if he will be willing to view her films. Was wanting to email him but unable to find his email address. Does anyone know the best way to reach him? Unable to locate the post that had a discussion on him either.

Dr Menezs is another option since we are not too far from Iowa!!!!

Found out that Dr ORO will review films by mail and sees kids 14yrs and older. I hear his primary focus is adults and the other Peds Docs would be better at dealing with kids/teens.

Just want to add that I feel blessed to have one of the best peds specialists so close but hopefully will have more peace that we are on the right path after getting another expert opinion!lol

Pray all is well with your kids!
Julie
Last edited by jupes on Thu Aug 20, 2009 10:27 am, edited 1 time in total.
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Who should we see for a second opinion?

Postby memom » Thu Aug 20, 2009 9:09 am

Hi -


Dr. Keating is wonderful to work with. My daughter has a Chiari 1.5 and syrinx. We sought out Dr. Keating for a second opinion and decided he should be our primary NS after meating him in person. We sent our films to him through the mail. He reviewed them and got back to us via e-mail immediately. We have had many conversations through e-mail which has been very nice. For one thing, we have a written record of everything that is said. This helps so much when you are trying get your mind around all this.

His e-mail is rkeating@cnmc.org. I happen to know he is out of office until the end of August - so he may not get to you until beginning of Sept. Again, he is great to work with, easy to talk to and highly respected. I would not hesitate one minute to recommend Children's National Hospital in Washington D.C. either. They treated us so well during our recent stay. We are huge advocates for the hospital and Dr. Keating. All they treat are children and that was very important to us.

We are 3 weeks post dc surgery and everything is going very well. We feel very blessed to have found Dr. Keating and do not hesitate traveling from Florida to Washington to see him. Good luck to you and your family - I hope everything goes well for you!

MEMOM
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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Re: Who should we see for a second opinion?

Postby lcolangelo » Sat Aug 22, 2009 7:08 am

Dr Menezes is wonderful- we just got back yesterday from Iowa-- Dr. Menezes opereated on my 3 year old. It's a 13 hour trip for us-- but worth it-- he is the best. He is sometimes willing to look at films by mail, (he has operated on my older daugther 4 times). But usually eventually wants to see the patient. Good luck to you.
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Re: Who should we see for a second opinion?

Postby Sara » Sat Aug 22, 2009 5:50 pm

Very few docs will review films by mail without seeing the patient. This is because you really can't get the whole picture just by looking at films, you need to see how the patient is affected. So don't be surprised if they ask you to come for a consult.
Sara
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