My 4 year old daughter has MM.We live in Tenn and the neurosurgeon here told us to wait to do surgery until she showed further signs of progression.Dr.Steinberg reviewed her scans & is recommending surgery.Thanks to the neurosurgeon here,we can't get her insurance to approve us to go to California.I read about the long term sudy at Columbia-Presbiterian and was wondering if anyone might have any info on this.Do they accept kids & without insurance???I don't want to take her back to this doctor because he told me that it is my fault she has mm because I let doctors do radiation on her to save her vision because of her optic tumor caused by NF1.I am willing to travel to get this surgery done but I am having trouble getting anyone to see her without her insurance coverage.Will Columbia be able to help & does anyone have their contact info??Any info will be greatly appreciated.Thanks to everyone out there.

Hi Jnokes,

Sorry to hear about your insurance issues. I would fight your insurance company to get your daughter to Stanford and Dr. Steinberg. There are two specialist in Moya Moya in the U.S. and one of them happens to be Dr. Steinberg. There is no "treatment" for MM except surgery. The "wait and see" is dangerous. What are they waiting to see? There has to be an appeal process for you to fight the insurance company decision. Perhaps a letter from Dr. Steinberg about MM as it relates to your daughter's case would be beneficial in fighting the insurance company.

Keep us posted on getting your daughter proper care for her Moya Moya.

Hugs,

Lore

I agree with Lore 100%, to try and appeal the insurance company’s decision with a letter from an expert like Dr. Steinberg. Many here have fought the insurance company and eventually won their case. MMD is rare and many doctors/Ins Co.’s aren’t as familiar or experienced with this devastating disease and the results of the “wait and see” diagnosis.

Also, in regards to your question about Columbia-Presbyterian Hospital, the only information I remember about a study, is this post: http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=news;action=display;num=1095173402

I’m sorry I don’t have any answers about Columbia Presbyterian accepting you without insurance, but I will say, it’s been my experience that there are doctors there who are less aggressive in their approach to MMD. So, IMO… if an expert like Dr. Steinberg says surgery is needed, that’s definitely the road to take. Dr. Steinberg saved my niece’s life when the doctors here in Philly said to wait. This disease effects everyone differently, depending on each individual case and specifics, but it is a PROGRESSIVE disease, so that’s why I never understood the “wait and see” approach after seeing my young niece have 4 devastating strokes. That’s not what you want to “wait and see” happen, and a stroke is always possible with MMD.

There was a post about a doctor in TN, Dr. Scott Standard - Nashville, TN. He worked with Dr. Steinberg in their particular case. I don’t know if that would be of any help to you, but it’s so important to get a doctor with experience, and anything is worth a try.
http://www.moyamoya.com/cgi-bin/yabb/YaBB.cgi?board=surgeons_board;action=display;num=1133645372

Also, as Lore said, Dr. Scott from Boston is also an expert as well and specializes in pediatric MMD. The info for him is here on the links as well. Contacting every possible expert source to help you get your insurance to agree that surgery is the only option with MMD, is also a thought.

Please keep us posted and let us know if we can help in any way. You’re in our thoughts and prayers…

Mar