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
I believe you may have read things inacuratly abour asprin. Most of us are on a low doasage asprin. I am on a daily 81mg od asprin. To know what you should do for your MM symtions is talk to your MM specialist. What may be okay for me to do may be very diffrent than what you should do. But the one thing everyone should have in comman is a MM specailist neorologest. My neurologest is not the same person as my neurosurgen. My neurologest was recomnended by my neurosurgen for follow ups since he is closer to home. The neurologest when i had my stroke couldn't figure out why i had a stroke so she sent me to the Mayo clininc in MN, a neurologest there made the diagnosis, and I choose knew I had to switch neurologest when i went on this sight to a MM specialest for any followup. If you have MM you need to have an anual chack up with your Neurologest unless the MM specialized neurologest say other wise.
I hope this helps,
Becky

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

HI,  I take 81 mg of asprin  everyday.  I'am pre-surgery but they may even increase the dose after surgery.  I am scheduled for surgery wednesday but because of a few different issues Im having, it may be getting post poned. But the surgeon said to continue taking my asprin up too the day of surgery! Which I was surprise by since usually you have to stop taking such meds  before a surgery.

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

The aspirin - no aspirin question was brought up at the Moyamoya Symposium a few weeks ago. One of the speakers, Dr. Martin, a neurologist from London, does not prescribe aspirin or surgery for his patients with Moyamoya. Most neurologists, including Dr. Steinberg do bypass surgery for symptomatic patients prescribe aspirin afterwards to keep the blood flowing through the surgical graft sites. I was on both aspirin and an anti-platelet to prevent blood clots prior to surgeries. Even the neurologist who didn't diagnose Moyamoya prescribed the apirin and antiplatlet.

There are many controversies surrounding Moyamoya and its treatment. Even the experts disagree. Doctors are only people, same as you and me. The best learn all they can to determine what they believe is the right treatment for their patient. Very few have the experience that comes from treating large numbers of patients. Because this disease is so very rare there aren't long standing treatment protocols that have been proven to be effective through clinical trials. We each need to learn all that we can about the disease so that we can ask sensible questions and make informed choices regarding our treatment.

It's been posted on the site before, but here is the link to the videotaped presentations from the symposium - it's worth watching. Might answer some of your questions.
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Kim

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!  [smiley=engel017.gif]

God Bless You
Michele            

Don't misundrstand me, after carefully reading everything I could get my hands on about Moyamoya, I believe that if a person is symtomatic (stroke, TIA, ...) and has reduced cebrebral blood flow or reseve (as shown on SPECT, Transcranial Doppler, PET, Xeon CT), then surgery is the only sensible option. Otherwise, he/she is playing a game of Russian Roulette; the bullet's in the chamber, the stroke will come around eventually - no one can predict when or how big. I fit the above criteria and didn't care to play Russian Roulette with my brain and so chose to have the surgeries. While the suregery itself presnted a risk, it was a much, much smaller risk. My decison was based on the cold, hard facts shown in my test results. I was also 54 at the time and didn't believe that the surgery would become any easier as I grew older - if I was lucky enough to grow older.

When it comes to kids with MM, I think it's important for parents to consider the tendency towards mental decline (progressive cognitive and learning impairments) due to the reduced blood flow.

Recall too that Dr. Martin hasn't treated a very large number of Moymoya patients. I'd not be surprised to learn that he may change his protocol after his interactions with some of the more experienced presenters at the symposium.

Any way you cut it, this is a terrific decision to be faced with. We need to educate ourselves. I wish that all the full-text articles found on pubmed.com about Moyamoya could be made available on this or some other website for Moyamoya patients to access. It would make it easier for each of us to make informed decisions about our care.
Kim

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.