Hello, I am 24 years old and was just diagnosed with moyamoya. I have had no other symptoms other then headaches. I feel like everyone finds out by having some form of stroke. I have been completely healthy my entire life and now I feel like a ticking time bomb! I have a cerebral arteriogram scheduled for tomorrow so I guess I have to just wait and see what they say about that. But does anyone know of someone diagnosed with nothing by headaches.  At this point, the doctor said according to my CT with contrast that my brain is getting adequately perfused with collateral circulation that has grown since I was a baby (he thinks). So I guess that is good but I feel like they are just going to tell me there is nothing they can do now. If that is the answer I plan on getting a second opinion from stanford but I would really like to know if anyone has a similar story. Any information is more then welcome.

My daughter was diagnosed from just headaches.  She had surgery on the right side within months of finding out she had it (only on the right side). Now it is showing up on the left but has not progressed enough to do the surgery.  I cna't believe they want you to wait until you have a stroke to do surgery.  If you have enough blockage you can have the surgery without waiting.  Sometimes I can't believe these doctors.  May I ask where you are and if you saw a Moyamoya specialist?  A lot of neuro doctors know about it but just not a lot.  I think I would get a second opinion.

I agree. The amount of blockage should be the major factor.  I think it's a great idea to send the results to Dr. Steinberg.  I couldn't imagine waiting for my daughter to have "symptoms" which could be a stroke.  Her left side has blockages but she also has a good blood supply. so we are watching it closely.  If they did an EDAS right now the brain is starved enough to go out and seek the new source so they think it might fail.  She told one doctor she wouldn't see him again becasue his attitude was to wait until she had symptoms.

I also had frequent migraines and headaches which led to my diagnosis and searching for help, but I also had TIAs just about everyday and symptoms for 10 plus years and those weren't explainable until the MM dx. My scans showed that somewhere I had had a stroke or two before. A black spot, I guess? I am missing two of the main blood vessels on one side and missing one of the main ones on the other side. At the age of 21 I had surgery on the bad side and doctors still say I shouldn't worry about the other.  It's amazing how well (or not) we can function even though we are missing a majority of the three major blood vessels. Thank goodness for those small ones filling up the brain. It seems that my MM affects my speech and thinking everyday!!

I hope you are able to get the right information...but I hear the same story. Wait til it gets worse on the other side or the scans show something negative. I'm now in my later 20s and although I felt good around 3 years after surgery I feel pretty bad again, but doctors also say it's nothing related (even though all the weakness and headaches I seem to believe are from MM), so I'm buying time.

Best wishes and good luck with Dr Steinberg!  I saw a regular neuro and wish I had gone to Dr S!

Headaches alone CAN be the only symptom.  I had non-relenting, intractable headaches.  When they finally did an MRI, they found one side almost totally blocked.  Do not wait for other symptoms to show up.

Thank you all so much for replying. I have not had any worsening headaches since the night they found the MM. My left internal carotid is completely blocked but apparently I have good collateral circulation.  I originally saw a neurovascular surgeon in Indianapolis, IN where I am from and he said basically to wait it out and that I MIGHT never have symptoms.  I did send the results of my arteriogram to Dr. Steinberg and he thinks that I need to have the surgery. Which is so scary! I am graduating nursing school in May and I get married in July. So it is so hard for me to rationalize having brain surgery with no real symptoms, but I also do not want to have a stroke. I am also worried about my insurance. I am 24 and a full time student so I am on my parents insurance for now. I know everyones insurance is different but does anyone have experience with insurance not paying for what I feel like they would see as "elective" surgery.

listen to Dr S!

As I said, I am mssing 3 of 6 major blood vessels to the brain but supposedly the doctors will simply keep monitoring  my other side (every 2 years) until something progressively gets worse. 

Dr S is good. He reviewed my files and records and said I could see him for a viist...even though everything was given the good to go from other doctors. I never got to see him, though.

My family talked to Dr. Steinberg on the phone a few nights ago and I can't explain how much better I feel about the whole thing. I think he is fantastic already. Especially since he took the time to call me from a conference in Hawaii. I'm going out to CA over my spring break in March to do some tests to see what my blood flow is and if I may have had a small stroke I didn't know about. Hopefully this will give me a better idea of how urgent surgery may be.