Has anyone had the surgery actually done in the Philadelphia/South Jersey area?If so, with whom and were you happy?  We are at Jeffesron with Rosenwasser who doesn't believe in surgery.
thanks
d

Hi,

We live in Chester County, PA, and our daughter, Daphne was diagnosed with moyamoya at the Children's Hospital of Philadelphia, after suffering two strokes.  This was last January, and Daphne was 15 months old at the time.

Doctors at CHOP told us that surgery would not be an option for Daphne, and that she would die - probably within a few weeks.

Luckily, we were able to find a doctor who disagreed (Dr. Steinberg), and travelled to California at the end of February.  Daphne had her surgeries last March, and is still proving the Philadelphia doctors wrong

I just want to share our story with you, because you may have to travel to find the right doctor.   I definitely would not accept the opinion of a doctor who does not beleive in surgery.   I highly recommend Dr. Steinberg, and I have also heard great things about Dr. Scott.  You might also take a look at the section on this board about Moyamoya surgeons and see who others have recommended.   It is really important to see a surgeon who sees moyamoya on a regular basis, and who you feel very confident in.  Don't just accept who your doctor refers, or who is the most convenient.

Good luck!  Please let me know if I can do anything.

Jenny