I have been wondering if there are any mm survivors who have developed other problems with arteries (heart, renal, etc.,) in other parts of their bodies?  Five years after my diagnosis & surgeries~~ when I turned 51 yo~~ I developed blockages in my heart, leading to stents, then 2 - bypass operations ( 3-way failed & then 5-way bypass 3 months later), 4 of the bypasses needed stents 6 months later,  & I have had 3 more times with additional stents.  My (not mm specialists) heart doctors have no idea what's causing my heart to keep blocking; they think it has something to do with mm. (I don't have most of the "normal" reasons people develop heart disease, except my father had heart issues in his 50's with a bypass when he turned 70 & I had a lot of stress in the past 3 years)   Dr. Steinberg (Teresa) said she thought there are a couple of other mm survivors who have heart problems.  My heart doc (in Wisconsin) thinks I should go to Mayo Clinic for answers.  If any one has experienced this or has any other ideas, I would appreciate any info.  Dr. Steinberg also mentioned trying coumadin but that scares me (too much like an experiment) Thanks for reading this far.....

I was just going through old posts, and saw your message.   I hope you're still active, and check the board once in awhile!

Anyway, I just wanted to tell you that my daughter has a congenital heart defect - her aorta is narrowed.  It's called coarctation of the aorta, and in the surgery report, the surgeon noted that it was an unusually long segment, and that it was not only narrow-appearing on the outside, but that it was internally thickened, as well.  Daphne's genetic doctors beleive that the moyamoya and her coarctation of the aorta are linked.

Basically, to fix it they had to cut out the section that was narrowed, attach a graft, and sew the two ends of the aorta and the graft together, in order to fix it.

I have done some research, and moyamoya and coarctation of the aorta have been noted to be associated with eachother, so I would think that your heart issues could be related to the same pathology that caused your moyamoya, too.

Please feel free to email me or PM me.  My email is moyer305@comcast.net.

Jenny (mom to daphne.  19 months old.  www.daphnestory.com)

My 10 year old neice had her surgery for mm about 5 months ago with Dr.Scott from Boston, and now is having problems with hypertension and shortness of breath.  The docs have found mm signs in the arteries leading to her lungs and kidneys now.  Pretty scary stuff.  Has anyone heard of treatment for this????  As if mm in the brain isn't scary enough.   My prayers are with all those who suffer from mm and the effects of this disease.  God Bless you all.

Gwen --

I have heard of kidney and pulminary artery narrowing linked to moyamoya.   Is your niece seeing any specialists for this? 

I would think she'd need a seperate specialist for each issue: a nephrologist for the kidney and a pulminologist for the lungs    

I will be thinking of your niece.  Please let us know if you find anything out.

Jenny (Daphne's mom)