My daughter had surgery on both sides by Dr. Scott in Boston 8 months ago. She just had her first MRI on tuesday of last week...We found out the results today(after constant badgering of our local neuro.)  He said absolutely no change from her MRI before the surgery, and he is sending the films to Dr .Scott. What does this mean? Dr. Scott is out of town on conference, so I don't know when i will be in touch with him. Does this mean that the surgery didn't take at all or we just have to wait longer for them to "sprout in"....I remember Dr. Scott saying it would take 6 months to a year for the surgery to take effect...I just can't remember if he meant full blood flow(which is what i am thinking) or if he meant for the new blood vessels to grow at all...anybody with any experience? My optimism is dying fast.

                                      Megans Pop

I know this news must be very worrisome for you, but I just wanted to tell you to try to wait for Dr. Scott's feedback before you really trust the MRI.

If just a structural MRI was done (without contrast, and without an MR angiogram) then the results might not tell you a whole lot. 

When my daughter,  Daphne (almost 2 years old) had an MR Angiogram done three months after her surgery, her neurologist sounded pessimistic (as always).  However, when Daphne's surgeon, Dr. STeinberg, saw the films, he was very happy with the results.   She had an angiogram a few weeks ago, and her surgeon told us it was one of the best revascularizations he'd ever seen.  Which, of course, was great news, but if we'd have just gone on the local neurologists' word, we would have really been discouraged.

I hope I'm not rambling    I just wanted to point out that it takes a Moyamoya specialist to really interpret the tests (and to order the right tests).   I hope you hear from Dr. Scott soon --- and I hope you get good news.

Jenny (mom to Daphne www.daphnestory.com)

Megan's parents,

She is so adorable!  ;  I am still learning about MM and don't have much experience with MM and children; however, two very knowlegable and experienced parents have already repsonded to your post (Carol and Jenny)... I also agree that you should wait to hear from Dr. Scott himself.  I've read such great things about him on this site.    The main message that I've gathered from this and other posts is that it is vital that we seek advice from a MM specialist. (Although, I don't want to assume that your local neuro is not a MM specialist).  Keep the FAITH... Megan will be kept in our prayers...   I hope you hear back from Dr. Scott soon.

Take care,
Shan

kotipup wrote on Sep 13^th, 2005 at 10:15pm:


Absolutely!  I believe my one year post-up didn't show much except evidence of MM and bi-lateral surgery.  It was my one year angio that showed excellent results (by the way - Dr. Scott was my surgeon too!).

-Shari