Hello all!
This is my first post :-) 
I got some news that took me by surprise yesterday.  I was diagnosed with MMD in January.  My doctor here in Des Moines didn't feel that i needed surgery because I had good blood flow. But, he admittedly did not have much experience with MMD so wanted me to go to Mayo in Rochester.  My insurance didn't pay for Mayo, so I ended up going to the University of Iowa Hospital.  The neurologist did an angiogram and also stated that surgery was not necessary.  I was fine with that prognosis, but he didn't really give me much information about what to do and what not to do.  He told me to use "Iowa Common Sense" when it came to activities.  I wasn't satisfied with that answer, as I am a very active person, so I wanted a second opinion. 

I sent my images to Dr. Steinberg at Stanford.  His nurse called me back yesterday and said that Dr. Steinberg is recommending surgery.  Needless to say, that is not the information I thought I would receive from him as I was told by two other neurologists that it wasn't necessary.  Granted, I know he is the expert, but I have some reservations...does he feel that everyone with Moyamoya needs surgery?  I'm just really struggling with the news.  I am 38 years old, have two preschoolers, and own a business.  I don't want to go through brain surgery if I don't have to.  My husband and I have talked about getting a fourth opinion through Mayo, since it is closer. 
Ugh!  Any feedback, support would be great right now. :-)  I am usually a very positive person, and this just has me reeling.  Thanks in advance for any info!!

Hi.  Sorry to hear of your struggle.  I was misdiagnosed with "Moyamoya - like "disease for 23 months.  I was told the vasculopathy was from prior drug use.  But I kept getting symptoms and they kept getting worse and worse and they couldn't explain it.  I finally got two other opinions and both said Moyamoya  disease.  I sent my films to Dr. Steinberg at Stanford for his opinion.  He says Moyamoya and wants to do some tests.  From what I understand moyamoya is progressive and if that is true I want it out of my head.  Medical management worked for almost 2 years for me but I had no quality of life and was in constant fear of a stroke.  I will say prayers for you good luck with your decision.

Sorry to meet you on this board.  We are all here for the same reason.  Either we or a family member has been diagnosed with MMD.  It was my 15 year old daughter.  As to weather Dr. Steinberg recommends surgery for all patients, I don't think so.  Most bilateral patients need surgery on both sides.  My daughter was bilateral but he only operated on the right side, saying the other side was not ready.  We watched it for 2 years before surgery was done on the other side.  I feel if he always advised surgery, he would have wanted to do both sides in the beginning.  I hope this helps.  If you decide to go to Stanford, you will be in the best hands possible.  We traveled from Louisiana for both surgeries.  Keep us posted and good luck.  Prayers are with you. :)

Moyamoya is progressive.  It does not get better on its own.  If you have moyamoya, you are prone to strokes. 

My husband was dx in July 2013 while undergoing chemo for bladder cancer.  He passed out in the bathroom one day, hit his head, finally went to ER where they did a CT scan of the head and after a bunch of neurologists and radiologists looked at them, and did some more scans, they agreed that yes, as unlikely as it seemed, this 58-year-old guy who passed every neurological bedside test and was asymptomatic had moyamoya.

I know he'd had a TIA the previous year because he'd talked of "having trouble pronouncing some words" -- but he refused to get it looked at.  I also know that his personality changed a lot in the last decade -- depression, inability to handle social cues and office politics, short temper, unwillingness to interact with other people.  So how long he'd been having TIAs and ignored them is anyone's guess.

By the time he was diagnosed he was severely narrowed on the right and somewhat better on the left.  He had EDAS in August last year and had a very easy recovery.  "Brain surgery" sounds very daunting but it's amazing how quickly one recovers from this.  He was out of the hospital 3 days after surgery, stitches out 2 days later. And if he hadn't a) drunk a ton of tomato juice, deluding himself that this was "hydration" and b) bonked his incision site on a kitchen cabinet door that he'd left open, I think he might be here today.  But he did both those things and did have a sizable stroke that went into seizures and refractory status epilepticus.

His moyamoya was pretty advanced and the neuro said that "smart people are often able to compensate" -- which is why he was largely asymptomatic.  Plus he'd been through dose-dense cisplatin chemo and cisplatin elevates risk of stroke all by itself.  So he was a time bomb waiting to go off for years. 

If your disease is not as advanced and THE big gun in MMD in the country says surgery, then I'd recommend flying out there and talking to him.  MMD is not something to trifle with and surgery does usually have good results.  My husband was an odd case because of other complications.  Your experience will likely be far more positive.  But the surgery and recovery are not that big a deal.  On YouTube there is a series of videos by a young woman who had surgery for moyamoya -- including right after surgery and a few weeks later.  Look for them, they will really help you make your decision.  Good luck to you all.

They can not do a bypass without total occlusion, as bypasses simply won't work if there's still blood flow.   Why do your local tests show blood flow but Dr. Steinberg's office says surgery?  Did Dr. Steinberg's office say you had blockage?  In my case I had blockage on right, and local said still open on left, Dr. Steinberg's office thought blocked on left as well (due to MRA overestimating blockage); however I did need bypass on right so not really an issue for me. 

But you don't have to worry, if you do go they'll do more accurate testing, and if you have bloodflow they won't do a bypass.   In other words they won't needlessly do a bypass. 

OneStone:  I'm so sorry to hear about your husband.  Thank you so much for sharing.
jrl:  All three neuros have said the left artery is completely blocked off.  I think the two that said I didn't need surgery felt that the collateral vessels were providing enough blood flow to my brain at this time, thus, the "wait and see" approach.  Dr. Steinberg is concerned about another stroke.  Since I'm only 38 and in good health otherwise, he feels that the surgery risk is lower than my risk for another stroke.
I did make an appointment for surgery.  I will be going out to California the first week of November.  They have scheduled me for another angio as well.
Thank you all so much for your responses.  It is good to know that I am not alone in this.  I have a really good support system with friends and family, but none that can totally relate. 

Thanks for the clarification.  It must have been a hard decision.  My understanding is that the flow provided by the vessels that grow around the blockage always puts you at risk for stroke due to their small size.  Having said that there are apparently people that live with this all their lives,never knowing it and are fine, although I suspect they are in the minority.  The other issue is that adults are more prone to hemorrhagic stroke (others can correct me if that's not correct).  Having a bypass after a hemorrhagic stroke is not as successful as ischemic (which is what children usually have). 

Anyway, having said all that I think you have made the right decision, it's not guarantee but I think it's a safer route to go. 

Let us know how it goes!

Monica, I see you decided on the surgery but I just had to comment.  Any doctor who says that moyamoya vessels are providing enough blood flow does not know this disease.  The reason that MM makes one prone to strokes is because the moyamoya vessels are weak and prone to hemorrhage -- which is what the strokes are. 

Maybe we need to do an ice bucket challenge for Moyamoya to raise awareness.  The neurologist at Sloan-Kettering where my husband was being treated for his cancer said that most docs never see this.  He had never seen one before.  He said it is usually just a question on a test -- "What is a cause of strokes in children?"  -- and that's it.

I would have taken him to Stanford, but his doctors at NYP were working hand-in-hand with MSKCC and since he had the additional complication of the cancer (which elevates stroke risk and so does the cisplatin chemo he was getting), he wanted to stay put.

I'm glad you decided to go to Stanford and get the surgery.  Good luck to you and speedy recovery!

Thank you so much!  I leave next Wednesday for Stanford!  I'm ready to get it over with and get on with my life.  It will be hard to leave my two little guys for 2 weeks, but they will be in good hands.  I feel good knowing that this will increase my chances of being around for them and my husband!!

Make sure to update us!

Hi,
I was recently diagnosed with Moyamoya and was told I don't need surgery because the collarteral vessels are bringing enough blood to my brain.  According to the surgeon, my spect scan shows my brain is healthy.  However, I have experienced constant headaches for the past 4 years.  I'm in pain everyday and so far, no luck with any meds.  I've tried many many headaches preventatives and pain killers over the years .  They work for a little while and then they stop working.

After reading these posts I think I need to send my files to Dr. Steinberg at Stanford as everyone is suggesting.  Maybe I need a second opinion.

Hi, Susan....yes, DO send your scans to Dr. Steinberg.  A doctor who says that the collaterals (the small blood vessels that look like the "puff of smoke") are supplying enough to the brain doesn't know jack about moyamoya.  You need a specialist with experience in this disease.