I am new to the board but not MoyaMoya. I have always been advised to avoid aspirin or any form of anti-coagulant. I have been picking up on the board that this advice is not common.  Has any one else been given this advice?  I have had 2 bleeds (1980 and 2002) which come on suddenly with no warning so this may be the reason for the advice.  No surgery either.  I'm just curious!

Bev,

Like Becky stated, speak to your neuro. I started on 81mg. I now am required to take 325mg daily and will take it for the rest of my life. I am a 29 year old moyamoya survivor who had surgery 16 months ago. Actually 16 months ago today. I believe that most moyamoya patients are required to take asa post surgery to keep from having further strokes and to keep the blood flowing through the mighty handy dandy surgical work.

Reagan

I was told by my original neurologist in 1980  to avoid aspirin and this was confirmed after the second bleed  I ws told to take aspirin and then when I questioned it my neurologist read my notes and confirmed no aspirin and no surgery  My neurologist knows about MoyaMoya as he questioned the original diagnosis until he saw my MRI scan

VERY well said Kim!  As someone who has not been surgically treated, I remember spending the first month after finding this sight ready to die at any minute from the impending doom of stroke.  From watching all the MM specialists at the symposium, they agreed they don't even have a standard definition of MM, many children are diagnosed with MM when their condition DOES improve on their own, (therefore not progressive and not MM) and there are different approaches to treatment, as well as surgical options.  For the doctor that does not perform surgery on adult patients, he reported many of them continued to have TIA's and NOT ONE PATIENT had a future stroke.  Sometimes I wish some of the fear mongers would take a day off.  I know I could have went without the stress!    As for taking aspirin, I had a stroke, it was a clot. I take an aspirin everyday, end of story.  For someone with a history of bleeding it may be different.  I know other MMers who don't take aspirin, so I wouldn't stress about it!  Just because your Dr. doesn't "treat" you with a cookie cutter approach, doesn't mean he doesn't know what he is doing, he may actually be providing you with superb, individualized care based on his years of education and experience and considering your individual health and risk factors!  Hang in there, I too believe I have had MM for decades prior to diagnosis!  When the good Lord is ready for me, I'll be ready for Him, and not a day earlier! 

God Bless You
Michele            

Thanks for your comments.  It was interesting to hear about the London doctor's comments about surgery it must be a stategy held by the UK NHS as it is the same advice I receive from my doctor in Birmingham.  I was lucky in 1980 (age 11) that I was seen by someone who knew about MM.  when I see my neurologist I may ask him again about asppirin.  MM has never slowed me down and I have never suffered from headaches or TIAs.  After my bleed in 1980 I continued with my education took and passed all my exams and have been in full time employment since leaving college in 1987.  Slight hitch in 2002 when I had my second bleed during my pregnancy.  MM was confirmed by an MRI as it was not believed that I could have such a rare condition.  I have a happy and healthy 6 year old son and returned to my job at the first opportunity and long may this continue.