Hi Michelle, 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

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)