Hi Taly,

For what it's worth, in all my years of research, I have never once heard of Derma Inversion as being a surgical technique for MMD. Did you inquire about the surgeon's results and experience with this technique he recommended? Did he explain the procedure of it? I’m very curious as to what exactly that is. (??)

With a little research and a second opinion, perhaps you can fight medicare and prove this isn’t the typical surgical protocol for this rare disease, and hopefully then you’ll get a MM experienced doctor to do the surgery. I don’t know your son’s specifics and I’m not a doctor, but that sure did raise a red flag to me. I’d certainly want a lot of questions answered before I’d allow that doctor on my son’s case.

My

Mar

I never came across this technique in my research. You really need to enquire further about this. As Mar suggested, what exactly does the process entail? What experience does he have doing this? What is his success rate? And has he ever performed this surgery on such a young child?

Thinking of you
Mark

Hi Taly,
I think you're getting some good advice here.

Here is a link I found to an article about Dural Inversion that was published in 1997. I don't know anything about it, but thought it might helpful. Found quite a bit when I did a google search. Maybe you can find some more recent information.
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I especially like the advice given by Dr. Scott at Boston's Children's Hospital about this and other surgeries recommended for children with Moyamoya. Here's that link
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Don't agree to any surgery until you understand exactly:
1. what the doctor is proposing to do
2. why this procedure and not another
3. what problems could possibly occur
4. how likely it is that those will be encountered
5. how many times has the surgeon performed the procedure (they aren't considered proficient until they have at least 100 of a given procedure under their belt)
6. how many of those patients have had successful outcomes and
7. what is his definition of successful

If you're not satisfied with the answers received, you may be able to use his answers to convince your insurance carrier that only a moyamoya specialist can successfully treat you child. To do that you'll need to ask the same questions of a Moyamoya specialist like Dr. Scott or Dr. Steinberg for comparison.

Another thought, have you sent your child's diagnostic scans to Dr. Steinberg?  If he's familiar with the case, you might talk to Bob, in Dr. Steinberg's office about his possibly speaking to your insurance company for you, that's what he does. I know he's been able to negotiate with them for other patients so that they were able to have the surgery there. Sometimes Stanford will agree to do the surgery for the same cost as the insurance company would pay to your in-network hospital and surgeon. It might be worth a try.

Best of luck,
Kim

I've been fighting with Oklahoma Medicaid for almost 2 weeks. Talk about a headache!! Their stance is since there is a neuro surgeon in the state who has done this procedure before and who has handled Moyamoya before that there is no reason to go out of state.

I spoke to Dr Scott in Boston and he was REALLY helpful, offering to write letters or whatever we needed him & his office to do. But unfortunalty that didnt work. I am waiting to hear the results of the first & second angiograms before i make anymore decisions.

I know that he is too small for the bypass opperations and from the research ive done this procedure looks to be his best option.

Dr Gross (Ethan's surgeon) Trained with Dr Dauchel (i think is his name) & hes the guy who, I guess, perfected this method. Dr Scott said that Houston Childrens Hosp has had a lot of success with this method. So if hes confident with the method then it eases my mind a little.