Hi all,

My lil sis had her first major stroke when she was 20 and was told she had a congenital aneurysm and after 9 weeks in the hospital she recovered. 20 some-odd years later she had a second serious stroke while vacationing in Orlando FL and received an immediate diagnosis of moyamoya (in the emergency room!!) of the Florida Hospital. Apparently they are specialists and see so much of it that the Xray tech noted it immediately. She recuperated from the stroke and returned to her home near Cincinnati, OH.

She was referred to Dr Mario Zuccarello at University Hospital by the docs at Florida Hospital.  Dr Z tried an arterial graft, but her blood vessels were too small, so he did the EMS procedure, on one side. For reasons I did not understand, he did not wish to do the other side. After 5 years, she died two years ago of a major hemorrhage.

Dr Zuccarello is a cerebrovascular surgeon, but had no previous experience with MMD, admitting that he had heard of moyamoya in a seminar but had never seen a patient. He was kind to my sister and her husband, which is more than I can say about her GP's through the years who accused her of being a malingerer when she complained of headaches and weakness.

Here is his contact information:

Mario Zuccarello, MD

University of Cincinnati Medical Arts Building
222 Piedmont Avenue, Suite 3100
Cincinnati, Ohio 45219

513.221.1100 or 800.325.7787

http://www.mayfieldclinic.com/MC_bios/Bio_Zucca.htm

~deb

Deb,

I am a little concerned to read about this experience. Dr. Zuccarello is the most experienced bypass surgeon in the region and does STA-MCA bypasses for moyamoya disease regularly and successfully. Patients get referred from Kentucky, Indiana and Ohio. He lectures on bypass surgery nationally and internationally! If anyone needs any information, let me know. I work at UC.

OJ

Knowing how, and doing the bypass surgery isn’t the same as having knowledge about moyamoya the disease itself. I’m sure any neurosurgeon can do the bypass. It’s experience and understanding this rare disease that’s so important.

Mar

Exactly!