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

Megan's Parents....
....will keep you guys in my prayers.  Cara recently had her MRI and MRA...local neurologist said the bypass looks good, good blood flow...but he couldn't tell with the graft (sprout-in)...its been 14 months from first surgery and 13 months second surgery.  Cara did have both direct and indirect surgeries on both sides just incase the bypass didn't work.  I have read it could be up to two years for the sprout to be fully functional but I have read different time frames for different people.  I am getting a copy of her films send to Dr. Meyer who did the surgery and will be curious as to what he says.   Maybe it will take little longer for Megan.  I felt that Cara kept improving, getting bigger, stronger and very alert...it is slowly working somehow.   Has Megan been having any problems or symptoms or going downhill ?   Hang in there....and you'll hear from Dr. Scott soon.

tight hugs,  Carol

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)

Thank you for the quick responses, and I agree totallly. your feedback gave me a sigh of relief,  I know Dr. Scott will give me a straight and accurate answer. But I needed something to hold me over until I talked to him and you guys gave me that.  Thank you.

Megan's parents,

She is so adorable!  ;;D  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... [smiley=hug.gif]  I hope you hear back from Dr. Scott soon.

Take care,
Shan

Hi Megansparents!

As your note said Dr. Scott performed the surgery on your beautiful daughter so I am sure it was successful because as I understand it he is the very best!! My daughter had very scilled surgeons taking care of her three years ago during diagnosis and doublesided surgery but they didn´t have any MM-experience. So they were in contact with Dr. Scott before, during and after surgery (as I was on mail) and everything wen´t very well. I also had her surgeon to ask Dr. Scott to look at her 2-year-post-op angio and everything was "excellent for the moment".
What I am trying to say is that you have all the reasons to feel confident that Dr. Scott has done the very BEST there is to be done for your daughter.

Take care and be sure to give us the info you get from Dr. Scott when you talk to hhim.

Annica

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

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

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