My niece was just diagnosed with Moya Moya.  I get all of my information third or fourth hand.  The are talking about doing a procedure that they havn't done here in the states and have only done 14 of them... in Austrailia.  Has anyone heard of this surgery and if so can you tell me anything about it?  Thanks!!
Rebecca

Alright so I learned a little more today.  They are going to drill burr holes in her skull.  We are at a total loss as to how that will help.  Has anyone heard of this procedure?  It sounds a bit archaic.  Help!!! Thanks!
Rebecca

I live down under and I had burr holes drilled into my skull with my STA-MCA bypasses - this is apparently done to allow for  growth of new vessels into the brain from the scalp.
As far as I am aware this is done in conjunction with a procedure like STA-MCA or Edas. I have had no problem since and all I can feel is a little dip in my skull where they drilled.

Today the fellow informed my family that they were going to ONLY do the burr hole surgery because she did not have any vessles in her brain to attach foreign vessles to.  They hope that the burr hole surgery will help Tori produce a strong enough vessle in the future to be able to do a bypass surgery.  
When my brother and sister-in-law told the fellow that they wanted a second oppinion, the fellow told them that he would have to ask the doctor if that was ok.  The more I hear about her doctor, the less I like him.  Thanks for all of the help!
Rebecca

Just as an aside, I contacted Dr. Steingberg's office and they were SUPER friendly.  If you call them they will send out a free information package AND if you send them your films they will review them for free.  Finding out this info felt like a life saver, and maybe it will be.  
Rebecca

Hi Rebecca,

I’d like to add that, all the years I’ve dealt with this rare disease, either personally or with others here, I’ve found that any good, reputable doctor ALWAYS welcomes a second opinion, especially from an expert. A second opinion guarantees it’s the patient’s best interest they have at heart, not any ego or pride thing, or experimental approach going on.

In my family’s case, I’ll never forget this… they were talking personally with the head of the neurological dept at a leading university hospital, about getting a second opinion with Dr. Steinberg, and he said, “If it were my daughter, that’s what I’d do”. I’ll never forget that. He was the best in neurosurgery we have here, yet he knew they didn’t have the experience Dr. Steinberg did, and welcomed his expert opinion. Ya gotta respect that. He was, IMO, a good man and great doctor.

If your doctor is correct in his approach and experienced with MM, than who knows, Dr. Steinberg may agree with him, if he’s not as experienced, it may save her life. That’s how important a second opinion is, in a world where so many in the medical field know so little about this disease. It's very wise to get a second opinion.

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Good Luck! Keeping you and your niece in my prayers.

Mar