I have been told my three different doctors that I have moymoya syndrome.  One doc is my neurologist and the other two were neurosurgeon.  One surgeon told me that I don't need to have surgery right now.  He feels my body is compensating for the blocked artery.  The other surgeon (who claims to have expertise in moyamoya) recommended bypass surgery.  I don't know what to do.  Based on my research, it seems that surgery is really the only option.  Should I get a 3rd opinion?  I live in the Washington DC area if anyone knows of anyone.

Hi Marcie,

This likely will not help, but I'm facing the same exact problem right now (and also live in DC). If you find anyone else around here with an opinion you trust, I'd be curious. It's really, really hard to make this decision--I feel your struggle, because I'm having it, too...

I am also unable to help as well but in somewhat the same situation. On Tuesday, my doctor told me I have Moyamoya "like" symptoms. I suffered a stroke in January and on my follow-up angiogram in March the results showed my arteries looked worse than in January. He recommended I wait 3 months since I am currently not experiencing any symptoms but I am going to seek a second opinion somewhere in philly, nyc, or boston.

hi...yeah im in pretty much the same position...its errr a strange position to be in....i had a mild stroke in july last year....but didnt get told about what it meant or how to treat it until recently///aparently i had another tia sometime in the last three months of last year,may scans show moyamoya degeneration of the left carotid artery,,,and from what ive read the only viable long term treatment is re-vascularisatoin.
its a hell of a lot to take in.I try to see the positives i.e. surgery is a preventative measure, particularly if you minor or no cognitive/physical impairment ...scary stuff...most peoples mid life crises arent meant to be life threatening!!!
but im of the opinion that get as many specialised professionals to assess yr condition as possible...good luck.
steve

I was diagnosed with Moyamoya syndrome this January.  The surgeon at Kaiser who did my spect scan says I don't need surgery either due to good blood flow.  I haven't had a stroke, but I've experienced other symptoms like numbness and tingling in my hands and fainting spells.  But these symptoms all occurred in my teen years.  Currently, my major problem is my daily headaches. I've had a headache everyday for the past 4 years.  I'm having a terrible headache right now and I'm here seeking answers.

After reading all your posts, I think I need a second opinion.

What you need to know is exactly what is "compensating" for the lack of blood flow, and frankly, most neurologists are NOT experienced with moyamoya.

With this disease, the "compensation" tends to be small, weak blood vessels that cause the disease's characteristic "clouds" of blood vessels that gave it its name.  The problem is that these vessels are weak and prone to bleeding, and when they do, you have strokes.  If that is what your doctor says is compensating, get a new doctor -- STAT.

For ANY of you dealing with a new diagnosis, I strongly recommend that you see a neuro team that is experienced with moyamoya specifically.  Dr. Gary Steinberg at Stanford is the Big Gun for adults, and Boston Children's Hospital has two guys who are the Big Guns for adults.  Other hospitals, such as NY Presbyterian, have experienced guys as well.  But make sure that they know about moyamoya.  My husband's neurologist was convinced, even after seeing his scans, that he was dealing with MM syndrome caused by atherosclerosis because here was a 58-year-old guy who was fully functional but had near complete blockage on both sides.  It wasn't till he had his cerebrovascular angiogram that the neuro was convinced it was actual congenital moyamoya.

To the OP and other DC poster...curious as to which doctor you saw. I'm in the DC area, and I am scheduled to see someone next week. When I mentioned I had moyamoya to one, I think he thought I was a hypochondriac or something...

I am a father of a 3 yearold that was diagnosed at 2, as such I was in a slightly different boat but it did allow me to be objective.

If you have MM, you are in essence on a clock. Its not about if you will have a stroke its about when and the severity of it. You should always at the very least get 2 to 3 opinions. But at the end of the day you are going to need to select a type of surgery, direct or indirect. As such I would move away from opinions and starting talking to Drs about the two surgery options. You should be asking about how many they do a year, that surgery would they recommend, their success rate, mortality rate, follow up surgery rate, etc. You want someone that know the process and does a fair amount of these a year. Standford is know for direct. My son got his done at CHOC (southern cal). Boston is also a good place.

If you choose indirect surgery, it will take 6 to 8 months for the sta to support the blood flow, as such this also needs to be considered from a timing prospective. If it was me I would pace it so that you have surgery within 6 months from the date you find out. This way within a year you should be relatively safe from a post op prospective. If you have bilateral then you also need to think about the follow up surgery. Typically they do one side at a time.