Hello, my husband was just possibly diagnosed with MMD. 

He was having problems verbalizing his thoughts for about four days, doctors wouldn't do anything.  Then he had a seizure and was taken to the emergency room.  They did a CT scan and said that he had possibly had a stroke.  He is only 38 years old.  They transferred him to another hospital, did an MRI and said he definitely had a stroke. 

When the neurologist came in to talk to us she told us that he appeared to have a rare disease, Moyamoya.  So, they did an angiogram and sent him home the next day.  We still do not have the results of the angiogram, but the doctor that discharged my husband said that he didn't present as "classic" moyamoya. 

Anyway, I am confused.  How can I know for sure that they know what they are talking about when it comes to this??  We have a 7 year old daughter and I don't want her to grow up without her father!!

Hi, Welcome to our MM family

I’m sorry to hear your husband had a stroke, but I’m glad you found us. There is a wealth of information here that will help guide you down a road where you’ll find most in the medical community do not have enough knowledge about this rare disease. Read and learn all you can. If you arm yourself with knowledge, no one will be able to steer you in the wrong direction.

The Angio is the definitive test to show if he has MM or not. I would insist on an answer immediatey!! We see soooo many MM patients steered in the wrong direction. You must be aggressive when dealing with a rare, progressive disease. Time isn't on your side.

The red flag for me would be... if they said he didn’t present as "classic" moyamoya, then why did he have a stroke?? MM is a narrowing of the vessels to the brain, and every MM patient is at risk for a stroke, so if your husband had a stroke and if he does in fact have MMD, then he is NOT getting the proper blood, oxygen and nutrients he needs and he will stroke again or God forbid worse. This is a progressive disease. It will only get worse with time. 

If I were you, I’d get a second opinion ASAP from a MM specialist, one who deals with this disease on a daily basis. It costs nothing, except the mailing costs. Dr. Steinberg is one of only a few leading MM specialists in the country; Stanford being one of the largest MM referrals centers in the world. I would get copies of your husband’s films (angio) immediately and overnight them for Dr. Steinberg to view. He will call you immediately with his expert opinion. Then you’d get the answers you’d need and know what road to take. Experience with this disease is the key; in fact it’s vital.

I don’t know if you viewed this Stanford video under Links on the website, but if not, this may be very helpful in your research in understanding MMD as well.
 
Stanford video – Moyamoya Disease
http://www.moyamoya.com/stanfordvideo/moyamoya2.wmv
 
Surgery is the ONLY treatment for MMD. No medication stops the progression of this disease. By-pass surgery replenishes the brain with the blood it needs to help avoid the eventual stroke or hemorrhage that comes with this disease. My niece was 20 and they told her she didn’t need surgery and that we should wait. Within a week she had 4 devastating strokes that left her in a coma, paralyzed, and on a feeding tube. Her life was ruined due to the lack of experience, even at a major university hospital. I don’t ever want to see it happen to anyone else.

If you have any questions, please feel free to ask. No question is too small.

Will keep you, your hubby and daughter in my prayers.

Mar

Amen! That’s a very good question, and sadly we see it all the time, and it just doesn’t make any sense, does it? The red flag is definately there.

I personally don’t think there’s such a thing as “classic” MM. Either you have the “puff of smoke” or you don’t, and if you do, you’re at risk for a stroke/hemorrhage, period. Also every case is different, no two cases are exactly alike because of the numerous personal factors involved with each patient. So how can there be a "classic" MM? Someone with MMD can present with TIA’s, fatigue, fogginess, reactions to extreme heat, headaches, tingling, confusion, etc, yet, someone may have absolutely no symptoms at all, yet have this disease just waiting to stroke. Yet these inexperienced doctors play Russian roulette with their patients, simply because of their lack of MM experience. We’ve learnt that you can have a brilliant neurosurgeon, but if they have little experience with this disease, it can mean the difference between life and death. That’s why most patients who have had success treating this disease had to fight and be aggressive to get the help and the proper care they needed. This IS a successfully treatable disease!

I hope and pray you get your answers!

Mar

smtowngrl27 wrote on Sep 22^nd, 2008 at 12:45pm:


Hi Helen -

This is exactly how I felt once I was diagnosed with MMD.  Once I got the definitive diagnosis I started with the research.  Everything pointed to surgery.  When I told my family and friends - there was resistence - why do you want to rush into brain surgery, they asked?  It's not that I was rushing, but I felt like a ticking time bomb waiting for another stroke.  (It was a mild stroke that led to my diagnosis). 

Unfortunately, it's the doctors that can tell you whether your husbands case is acute or not.  And when I say doctors, I mean MM specialists...not your ordinary neuro.  I would hurry up and send your husband's films to Dr. Steinberg, when you get them!, and he will let you know how quickly you should act. 

Your husband should also listen to what his body is telling him...is he having TIA's?  TIA's are warning signs.   Has the doctor put him on Aspirin?  All in all, I would say keep hydrated, low stress, and get those answers! 

Sounds like you are on the right track...

Hi,
I'm sorry that your husband had a stroke and that you are having so much difficulty in finding a physician who can give you some definite answers. You may not find your answers at the Stroke Clinic at Harborview Hospital either - I sure didn't.

I had strokes in July 2007. After months of diagnostic tests at Harborview (they acted as though time was of no significance) I was told by Dr. Weinstein, who is a neurologist on Dr. Kyra Becker's team of neurologists at the Stroke Clinic there, that despite the "puff of smoke" on the angiogram, they thought I was just too old to have the disease "I didn't fit the profile". You see the literature states that Moyamoya is found most frequently in people between the ages of 0-10 and 30s-40s. I was 54 at the time. So my diagnosis was atheroschlerosis - funny thing though was that they could find it in no other part of my body. I was told to take aspirin and Clopidigrel. Interesting note is that Harborview was then and is currently participating in a study testing the effectiveness of these two medications together in preventing stroke. My doctor told we that they had patients who had survived as long as three years on that treatment before having additional strokes or dying. Not what I wanted to hear...

While researching Moyamoya at the U.W. medical library I found three doctors whose names kept popping up in the literature. Dr. Gary Steinberg at Stanford Medical Center, Dr. Scott at Boston's Children's Hospital, and Dr. David Newell at Swedish Neuroscienes in Seattle. I made an appointment with Dr. David Newell at Swedish, then took my films to his office. The appointment was scheduled for three weeks later. Meanwhile, I called Dr. Steinberg's office and overnighted my films to him - that was on Friday. Monday evening, his nurse called to tell me that his team had just reviewed my films, that I had bi-lateral Moyamoya, that I needed immediate surgery on both my left and right sides, and they would schedule the surgeries for later that month. When I met with Dr. Newell, he confirmed the Moyamoya diagnosis (my second opinion).

I know of two other women with Moyamoya disease who were patients at Harborview Stroke Clinic. Both were "watched" for a couple of years. You'll find this referred to on this website as the "Wait and See" treatment. Well, it did just what a progressive disease does - it progressed. The good news is that both have had surgery with Dr. Steinberg and both are now doing very well. Neither had an easy time during their surgeries. Whether due to the delay or just plain bad luck, I don't know. But, I think that surgery is the only effective treatment for Moyamoya and that putting it off while watching the disease progress is akin to playing Russian Roulette.

We had a gathering of Moyamoya survivors here on Whidbey Island in mid August. I'm convinced that this disease is not nearly as rare as stated in the literature. There are four women in the immediate area who have Moyamoya.  A cirlce with a twenty-five mile radius would encompass all of our homes.

Moyamoya changes your life, but it's a disease that can be treated and a disease that you can live with.
If you'd like to chat, please feel free to call me 360-331-8214.
Best wishes to you and your husband,
Kim