Hi everyone, my name is Kathy, and I've been wandering around for almost a month.

My mom was newly diagnosed as Moyamoya. She is 57 yr old, Chinese, with over 10 years' history of high blood pressure.

She was having a cold plus running a fever on Oct 2nd, and during that day, she fell 2 times as both her left arm and leg went numbness. The CT showed an intracranial hemorrhage on left side and she was immediately admitted into hospital.
Her MRI on Oct 4th presented a sign of Moyamoya. That was my first time to hear about this word. But after that, doctors still insisted on her having a DSA test to finalize the diagnosis, as they had argument internally. Some said it'd be aneurysm and kept denying the possibility of Moyamoya due to her age.

Only one of the neurologists was kind enough to give me the name of "moyamoya" and suggested that I searched on the internet for more information. Therefore, I found this wonderful website with all these helpful information and support.
She had her DSA on Oct 24, then it came to the final diagnosis of Moya moya.

It seems that the neurologists here in Shanghai do know something about Moyamoya. All of them tried to lecture to us on the symptoms and film results, but kept saying that there is no cure for Moyamoya. To be honest, it's quite annoying & upsetting.

I took her to the ER for her inner bleeding in left eye the day after she went home. And the neurologist there was really rude to us as his attitude was like: why you still wasted your time coming to hospital as you're aware that there was no cure to Moyamoya?! I almost came into a fight with him...

Anyway, the good thing is our neurologist is really a nice doctor. He explains a lot detail to us but his opinion is the same as others: no existing cure currently, and the neurosurgeries for Moyamoya are still experimental. After reading through the others' story on this message board, I really don't blame him for that,
I believe she's already in the best hands here we can find. But I'll not stop looking for a second opinion. I'll have her film and record email to Standford soon.

But I still have 2 questions.
The neurologist advised my mom stop taking any aspirin from now on. Why is that? Does anyone here still taking Aspirin as treatment to headache?

As I have a family history of stroke (my grandmother suffered several strokes after her first one in her 50s, she died in her early 60s because of it), my neurologist suggested me to have a test on myself. My CTA is scheduled tomorrow.
I've been having bad headache since my teens, and am now used to it in my daily life. Unless under great pressure and the headache gets terrible, normal headache doesn't bother me at all.
Well... the question is, did any of your neurologists suggest any test on your family members? I've found some articles about studies on Moyamoya's genetic pattern in family members...

Kathy,
Sorry to hear about your mom's Moya Moya. I have MMD and have had surgery in 2000.  My doctors never  told me to avoid aspirin.  I saw a cardiologist for my heart who had concerns about aspirin due to its blood thinning properties. Since the collateral vessels in my brain may be prone to bleeding, it may be best not to thin the blood.  I've read other posts where it is taken regularly as a treatment. I think that no one really knows for sure which is especially the case when dealing with rare conditions.
I've read that there is some indication that this disease is genetic.
Best wishes to your and your mom.

Russ

I am sorry to hear about your mother. Sending the info to Standford is the best thing you can do. As for the Asprin... I am currently on a low dose (81mg) daily. I also have something else to treat the migraine headaces I get some times. Before the surgery I took something daily for my headaces but after the surgey my headaces have come less frequently. I don't know why she whould be taken off of the asprin I would ask them at standford. Best of luck to you and your mom. You both will be in my thaughts.
Becky

Welcome to the group.I'm sorry to hear about your mom. I agree with what Russ has already said.I imagine that she should stay away from asprin becasue she has had a hemorrhage and asprin will thin the blood.I have a very strong history for strokes and aneurisms also but it hasn't been reccomended that my other childrne be tested unless I see something that would indicate MM.Also the Dr.'s are correct that htere's no cure but there is treatment for MM which is surgery, have they mentioned that?
Mary Grace

Hi Kathy, Welcome to our MM family

I’m sorry to hear your Mom was diagnosed with MM, but I’m glad you found us. There’s a wealth of information here, and that’s the key, learning all you can! You’re really helping your Mom by researching and arming yourself with knowledge. Then when a doctor says to you: “why are you still wasted your time coming to hospital, there was no cure to Moyamoya” then you can simply say to him… “BUT, there IS successful treatment/management for MMD to hopefully avoid a stroke or hemorrhage, and you are seeking someone who has experience treating this disease” which apparently that neurologist did not! I don’t know your Mom’s specifics, but IF you get a doctor with experience in treating this disease, there definitely is hope!! A second opinion is always a smart thing to do, it saves lives. As I’m sure you’ve read, this is a progressive disease; it gets worse over time, so prompt treatment is very important to avoid that stroke that every MM patient is at risk for.

As far as the reason for stopping the aspirin, I don't know. I would imagine it’s like Mary Grace explained, but then again, I would have to ask myself if that doctor has enough experience in treating MMD to know if that’s best?? For example, Dr. Scott, a MM expert says: I believe that the basis for some of the strokes and TIA's in this condition is sludging of blood within the narrowed arteries at the base of the brain, the formation of tiny blood clots at these areas, and the subsequent breaking off of these clots into downstream blood vessels -- which blocks them off temporarily or permanently. Medicines which prevent this micro-clot formation, such as aspirin, are essential in moyamoya syndrome, and I believe that all moyamoya patients need to be on the medication permanently This is a perfect example of why MM experience is so vital. I think a MM expert could best answer that question, after knowing your Mom's specifics. It’s not enough to just know about MMD, because much of the information out there is outdated and incorrect. For example, when your neurologist said; “the neurosurgeries for Moyamoya are still experimental” Whether he’s nice or not, he’s just plain wrong! Dr. Steinberg has done over 400 successful surgeries alone.

I don’t know if you viewed this Stanford video under Links on the website, but if not, this may be helpful in your research in understanding MMD.

Stanford video – Moyamoya Disease
http://www.moyamoya.com/stanfordvideo/moyamoya2.wmv

Headaches are a common symptom of MMD. The cause of MM is unknown, but because it tends to run in families, researchers think that MMD may be the result of inherited genetic abnormalities. So with your history, it’s smart to be tested for MM. But I have to say it again, make sure you're tested with a MM experienced doctor and staff. We see it misdiagnosed here all the time because of lack of experience.

You and your Mom will be in my thoughts and prayers. Please keep us posted.

Mar

ooh that does sound like a nasty diagnosis...

just quickly.... hereditary moyamoya has been found to be much more prevalent in asians.... esp japanese and koreans but possible chinese also??

if your mother has experienced so much bleeding, then aspirin is definitely not a good idea as it thins the blood and the bleeding will be more severe. aspirin isn't really used to treat headaches, jsut to enable blood to flow through narrowed arteries...

Kathy,
   I was diagnosed with mm in 2002. Sorry to hear about your mom. I take a 325mg aspirin a day plus plavix daily becauce I also have heart disease. Am trying to do what is best for both.
Sharon

Thank you everyone. Your words and support really means a lot to me.

The good news is: My CTA went back negative for Moyamoya, and my mom has been quite stable.

And I've found another doctor who has been doing neurosurgery treatment for moyamoya. But what he is doing sounds more like EDAS to me, not STA-MCA. I'll keep looking into that.

The bad news is: I've been stupid enough having difficulty get her films scanned. But it's finally done! And I've sent out the email to Stanford.

Now I'm on my tiptoe to receiving any reply.

Thanks again everyone. I believe things will eventually get better!!!