My daughter has been diagnosed with moya moya and has been referred to Dr. Phillip B. Storm from Childrens Hospital of Philadelphia. He is a neurosurgeon, but I haven't found much about him and his experience with this surgery.  This leaves me concerned as to whether or not we are going to the right place.  Anyone with info. please let me know.

Michelle

Hi Michelle, [smiley=wave.gif] Welcome to out MM family!

I’m sorry to hear your daughter was diagnosed with MM, but I’m glad you found us, there is a wealth of information here and some wonderful people for support. We’re like family here.

I’m from the Philadelphia area, but I’m sorry to say I don’t know anything about the specific doctor you mentioned. Unfortunately it’s been my experience that the doctors in the Philly area have little experience treating this rare disease, and it’s so important your have a MM experienced neurosurgeon. That’s the key to success IMO, because one bad call can change her future, as it did in our family’s case, there at the University of Pennsylvania.

We always advise new members to learn all you can about this disease. If you arm yourself with knowledge, then when you come across the lack of experience in the medical community, they won’t be able to steer you in the wrong direction, as we have seen all too often in the past. You’ll then be making informative decisions.

You’ll find in your research that this is a treatable disease and very successful if you have an experienced doctor who has treated MM successfully and understands this disease. See, this is a progressive disease and the only treatment is surgery, so experience is vital.

You may also want to consider a second opinion with a MM specialist, one who deals with this disease on a daily basis. That’s very wise when dealing with a rare disease. What’s great now a days is, you can get a second opinion easily by simply mailing copies of your daughters films for review, and then they contact you with their expert opinion. Then you would know if you were on the best path for your particular case. All cases are different with this disease, and many factors are involved.

If you need any help or if you ever have any questions, please don’t hesitate to ask. No question is too small. I’d also be happy to speak with you in person or telephone if that would be more convenient. We’re here for you… you are not alone.

Keeping you and your daughter in my thoughts and prayers.

Mar

Michelle,

I'm sending a reply to your email...check it soon!

:)

Hi Michelle

I'm a long, long way away from Phily so I don't know anything about the doctor, but I just wanted to say 'hello'.

I ditto everything Mar has said, a neurosurgeon with moyamoya experience is essential.

Look after your little girl and keep us posted.
Mark (Luca's Dad)

Just to provide an update, to those who expressed interest.  It has been awhile since I have been on here and wanted to let you know that my daughter did have her surgery.  We did go to Dr. Storm in Philadelphia and all has went well so far. My daughter had her surgery last Oct. and will go for a follow-up angiogram this Oct. to make sure everything was a success.  They determined that she only needed surgery on one side at this time and if all goes well with the angio. then hopefully, she will not need the surgery on the other side.  Please all pray with me that we will get positive results in October.

Thanks everyone for your thoughts,

Michelle :)