I'm recently diagnosed at age 55.  Everything I read says surgery is the only course of correcting.  But my doctor says to up blood pressure medication and go on statins.  I had issues with Statins in the past affecting memory and muscles.  Is this just a step in the process?  Can I expect a stroke before I'm a candidate for surgery?  I have had extreme headaches which caused the tests that brought the diagnosis.  What do I plan on?    
Am I just too old for surgery?  Looks like all the data is on younger folks.  I'm a few years away from retirement and want to know if I should pursue a medical disability for this, my doctor says this is not cause for disability.  Is it possible I have a lesser version?  Are there moyamoya symptoms and indications in other diseases?

If it were me I'd find a neurologist experienced with MM before settling for a "wait and see" approach.  My neurologist couldn't figure out what was going on with me for 3 years told me it was a waste of my time to continue tests, so I listened, and then had a stroke, which revealed the MM.  He then told me nothing could be done for me, so I did my own research and found this site and Dr. Steinberg (who will look at your films for free btw).  I had my surgery just before my 54th birthday.

So, my advice is get a second opinion from a neurologist you can trust.  Do not simply accept and wait unless you are sure that's what you should do.  It may indeed be the right thing  but you should be certain as you can you are getting good guidance.  (You can not have surgery without complete blockage first so that may be why your doc says do nothing for now.  A bypass simply won't work without blockage.)  I'm now waiting for the blockage to occur on my left side.  Anyway, good luck!

Just to clarify I meant blockage on either side not both has to happen before surgical intervention.  If the cerebral artery is completely blocked then a bypass can be done.  There is no natural cure for this that I know of.  I encourage you to send your films to Dr. Steinberg's office.  There are people who live with this, but the fine vessels that grow around the blockage, do put you at risk for a stroke.    I was having many TIA's (mini strokes) over a long period of time, brain fog, crying for no reason, stumbling, tingling, numbness, all were warning signs that my g. p. ignored and neurologist dismissed till I had a stroke while mowing in the middle of an empty lot with no one around.  Please don't be complacent.  Get another opinion.  They may be right but it's just good to be sure.

He is a neurosurgeon at Stanford University at Palo Alto CA.  See http://neurosurgery.stanford.edu/moyamoya/index.html .  There are other neurosurgeons (there's a section on here about them).   In any case his team will look at films and give you an opinion.  As I said, if there isn't blockage then surgery is not an option as far as I know. I also forgot to ask, it would seem a daily adult aspirin would also be a good idea to help prevent stroke, might want to ask you doctor.

What jrl said.  You have to understand that this disease is so rare that most neurologists have never seen it.  My husband was diagnosed after falling in the bathroom from dehydration while undergoing chemo for bladder cancer.  He hit his head on the wall and refused to go to the ER until three days later.  They did a CT scan of his head and found evidence of an old stroke.

The neurologist at Sloan-Kettering where he was being treated said "For most neurologists it's a question on a test in medical school -- 'What would be the cause of stroke in a child:  moyamoya.'  He was the first moyamoya patient this neurologist had seen.

He was 58 when diagnosed, not much older than you.  He'd had no awareness that he'd ever had a stroke, and indeed, the stroke neuro that MSKCC sent us to was amazed at how he passed all the standard tests with flying colors.  In retrospect, however, there were signs for at least 15 years -- an episode where his right foot went dead for a couple of weeks.  Social withdrawal.  Decreased ability to understand or navigate social cues.  Flying into rages.  Depression. Trouble holding down a job.  Occasional slight slurring of speech.  And yet, his intelligence was completely unaffected, and he even studied Shaolin kung-fu for a few years.  So we never would have guessed there was anything wrong. 

Back 15 or so years ago when he had the "dead foot" problem, he went to an orthopedist who wanted him to see a neurologist.  We thought that was absurd, but he didn't want to go.  He saw a chiropractor instead and that helped.  But now I think that the neuro recommendation was because the orthopedist may have suspected stroke, or something like MS or ALS.

Because very few neurologists even have MM on their radar, it's important to see a specialist in this area.  Gary Steinberg is the big gun in MM on the west coast.  For pediatric moyamoya, Drs. Scott and Smith at Boston Children's Hospital are the experts.  There are also doctors with familiarity with moyamoya in New York.

Dr. Steinberg had another MRI done.  Good News, no stroke.  Recommends angiogram stress MRI with bypass surgery.  My family are all on the East coast, so I need to see about getting surgery done near DC or Baltimore.  Anybody done comparison of the doctors?

Susan--hopefully you've had your surgery by now. But wanted to say 55 is not too old. My sister is 50 and just had surgery. She is doing really well. Surgery may not be right for everyone, but be sure you see someone with experience. If your doctor doesn't know anyone, and you can't find someone here, look at the websites for the various hospitals in your area and check out their neurology practices. You will find what you need if you search and talk to people. We were recommended to Dr. Anderson through a cousin's wife who is a nurse and had heard of him.

Hello I am Patty H moyamoya survivor.  I was misdiagnosed as intracranial aetherosclerosis, then more strokes, etc... The doctors said "we dont thenk the benefits of surgery outweigh the risks."  Isn't that my decision?  I fond Dr.Nussbaum in Mn., Dr. Meyer @ Mayo in Rochester and Dr. Wanebo in Phoenix to agree to do the surgeries.  Then I picked Dr. Wanebo and feel so blessed and thankful for him.  You need to fight for what you think is right for you.  I chose between hoping not to have "the big one" and giving surgery a chance.  I feel like I won!!!!  Keep fighting.  I am a 50 year old woman with adult onset.   

Stay strong.