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

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

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.



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

Mar