Hi all,

I recently got a diagnosis of Moyamoya totally by accident - I am totally asymptomatic.  I was having dizzy spells (which were determined to be inner ear and totally unrelated) but during the CAT scan for the dizziness, they noticed the first indicators.  Cerebral angiogram confirmed diagnosis.  Dx was done at the Beth Isreal in Boston where they have no Moyamoya specialist.  I am trying to get in to see Dr Christopher Ogilvy at Mass General.  I am also having my films sent to Stanford tomorrow.

The neurosurgeon and neurologist I have seen are not recommending surgery at this time.  Apparently my collateral vessels are very strong and I have a large (unusually so) ophthalmic artery that is providing additional blood flow.  I'm curious to see what the experts in this condition say.  I have a 5 1/2 year old son and almost 3 year old daughter so I really don't want to go through surgery if I don't need it but I also don't want to be walking around waiting for a stroke.

As a bit of other history, in 1997 I was dx with Ulcerative Colitis and within 6 months had my colon removed and small intestine reconstructed into a j-pouch.  J-pouch failed and after a five year period and four intestinal surgeries had the pouch out and a permanent ileostomy created.  I've already had my share of surgery and medical stuff and I'm soooo not looking forward to this process.

Anyone else out there have this dx by accident?  Or were you all symptomatic?  Has anyone had experience with Dr Ogilvy?  I've been told Dr Scott out of Boston Children's will operate on folks up to 35 but I just turned 40 this year.  I'm going to call them anyway to see.

Astrea,
Welcome to the family.

My DX was after a stroke, but there are others on this site that have been DX after migraines were investigated.

Your best desision you already did by sending your films to Standford. I wold look in the "Surgens wit Bypass experence" section since I belive Boston has a childerns nurologest and an adult nurologest who are MM experts. Seening and experts will save your life because they have a inner knolage about MM that the other "wait, until you have a stroke" doctors jusr dont understand.

Good luck,
Becky

My daughter (now 17) was daignosed at 14 without suffering a stroke.  She had headaches that got more severe and more frequent and her pediatrician stuck with it and helped us find it before a stroke.  We were shocked when they told us.  Like most people here we had never heard about Moyamoya.  The doctor toldus to "look it up on google".. Thanks to DJ for having this wonderful site.

Donna

Hi, I'm new to this site. My husband told me about it.
I was diagnosed with Moyamoya mid July. I was told right side carotid artery is occluded and left side is now showing some narrowing. Johns Hopkins told me to wait and gave me no treatment. My neurologist told me to send my films to Stanford. I mailed my stuff last week and I am waiting to hear back today...
Astrea, did you end up getting the surgery from Stanford?
Best wishes to you.
Thanks,
-Bethel

It's been a while since I visited the board... But I saw your post and had to respond. My dad was also dxed with moyamoya at the BI in Boston following a cerebral hemmoraghe almost two years ago. They also did not recommend surgery for him, saying that his collaterals were providing his brain with enough blood... Well, turns out they were VERY wrong... Mt dad wasn't comfortable just sitting around waiting for another stroke so he sent his films to Dr. Steinberg who confirmed the dx, but said that surgery was necessary. Well long story short, insurance denied his request to have surgery at stanford, but one year ago (in 3 weeks) my dad had his sta-mca bypass at mass general with Dr. Ogivly who did an amazing job and truly saved my dads life, it ended up being a blessing in disguise that he couldn't go to stanford, because he got to have his surgery close to home. Dr. Ogilvy is a brilliant surgeon you won't regret your decision to see him! If you want to PM me, I will send you my dads info, he would be more than happy to talk with you about his experience at MGH and the BI. Best wishes to you!!

Thought I would give an update.  Dr Scott couldn't have been more generous and supportive.  He said my situation is unique and that he rarely recommends holding off on surgery but in my case that is his opinion.  He sees no evidence of any lack of oxygen in the brain. He does want me to have a SPECT test which is being scheduled. 

After Dr Scott I went to a new neurologist at the Brigham who agrees with Dr Scott.  I am going to be meeting Dr Rose Du as a surgeon (recommended by Dr Scott) next week. 

Both Dr Scott and the neurologist feel that it is possible that my case may not be progressive, but want the tests as a baseline so that if issues arise we have something to compare.

I am still completely asymptomatic.

Because Dr Scott highly recommends Dr Du and has worked with her and is willing to follow my case through her I am cancelling my appt with Dr Ogilvy for now.

So for now we are moving forward with the test and the wait and see approach.