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http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl Moyamoya Related Topics >> Moyamoya Related Information and Support >> Questions for physician http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?num=1323219254 Message started by Cheryl C on Dec 6^th, 2011 at 7:54pm

Title: Questions for physician
Post by Cheryl C on Dec 6^th, 2011 at 7:54pm

Hi all. I was having eye issues so went to see a neuro opthamologist at Mass General. He sent me for an MRI and I was diagnosed with MM. He says that the eye issue is not related. I am going to see him again this Thursday and I'm also seeing an interventional radiologist to discuss the angioplasty for MM. I've yet to see a neurosurgeon, but from what I've read on this site, I'm not sure is an angioplasty is the right surgery for this disease. What questions should I be asking either doctor?

Title: Re: Questions for physician
Post by hrsridermom on Dec 7^th, 2011 at 9:18pm

Cheryl, I can't stress strongly enough...send your MRI results to Dr. Steinberg in CA or Dr. Scott in Boston. ASAP! And talk to a neurologist. You need to talk to someone who is an expert in Moyamoya and there aren't very many of those around. they can advise you better.

Best of luck to you and keep us posted.
Donna

Title: Re: Questions for physician
Post by Becky on Dec 8^th, 2011 at 9:34am

Cheryl,
I agree with Donna. Angioplast is not the correct choice for this disorder!! Dr. Steinberg in CA or Dr. Scott in Boston can help.
Please keep us posted,
Becky

Title: Re: Questions for physician
Post by Cheryl C on Dec 15^th, 2011 at 7:11pm

Last month after my MRI results the neuro opthamologist told me he thought I had moyamoya. Last week I had an appointment with an interventional radiologist. (I'm still not sure what that means... is he a radiologist, neurologist??). Anyway, he said he did not think it was moyamoya, but just a carvernous brain lesion or possible brain tumor that has been there a long time. It's funny to feel relieved to have a possible brain tumor, but I'm thankful that there is not immediate surgery. I see a neurosurgeon in January and have a second MRI in 4-6 months.

I did want to mention that I saw a story this past weekend on our local news station about a little girl with moyamoya in northern Maine. The town is raising money for the family and she is having surgery at Boston Childrens. I wish I know how to attach the story to share...

I wish you all luck and feel a definite place in my heart for all of you and your families. Thank you for your support!!

Title: Re: Questions for physician
Post by Becky on Dec 16^th, 2011 at 9:56am

Cheryl,
international radiologist is a radiologist who specializes in viewing neurological stuff. Like a Neurologist who specializes in strokes or tumors. I hope they diagnose you properly. You may just for a double check send your information to Dr.Steinberg and see what he thinks. I think better safe then sorry when MM is involved.
please keep us posted,
Becky