My husband, Pek, is 34 (father of 4) and has had his 3rd stroke.  He had his first one in Aug. 2003 where he was unable to use his right arm (it took about a month for it to recover).  We were told that it was a chemicaly induced stroke.  On Jan. 17, 2010 he was complaining of headaches and said he didn't feel well.  He thought he would just sleep it off.  The next morning, Jan 18 he went to call off work, but he couldn't dial the numbers so we took him to the er and they told us he had a stroke.  He had numerous tests but the neurologist told us he had some narrowing of the arteries, and the only thing against him is that he smoked, other than that he was healthy.  He was discharged on Jan 21.
On Feb 3, 2010 my husband had his 3rd stroke.  He was very confused and by the next morning he was unable to speak among other problems.  He had a Cerebral Angiogram which comfirmed that he had MoyaMoya.  His right artery was 90% blocked causing the recent strokes. 
On Feb 10th the Dr. put in a Wingspan Stent to open up the artery.  Durring the proceedure he did fine, but later that evening he started hemorrhaging.  Luckly he survived, but it has caused more problems of his right side.  He has just begun to walk and my problem now is the insurance co. wants him discharged and they denied him for in-patient rehab.  This is very scarry.  2 of the Drs. are going to appeal it on Monday & I pray to god that they can convince the Ins. Co. to approve him.  I don't know what I am going to do if he is released to come home Monday.  There is no way he can be at home unsupervised & I know I will have to return to work very soon. 
I am glad that he has been diagnosed, but I can see that this is just the beginning of our nightmare.

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I am by far no expert, and do NOT CLAIM TO BE ONE, but I have read up on MM quite a bit, and I have to agree, I do not believe the current medical information indicates Stents work with MM.  Please find yourself an experienced surgeon thats know's something about MM.  Its one thing to diagnose it, it's another to be competent enough to treat it.  Your own research will probably be able to reveal this.    Please check with the "surgeons with MM" experience link and try to find someone you are able to get in touch with for a consultation.  The fact he has an angio done is a wonderful step, I would get a copy of it on disk, or better yet a couple copies, and start sending them out to anyone on the list that is in your area.  Not trying to scare you, but his Dr. may not really know what he is doing and may not be up on the current literature about MM.  I wish you luck and will be praying for you and for his speedy treatment!
God Bless You! 
Michele

Hi and welcome to our MM family!

I agree 150% with all the above posts, and I want add that MM is a treatable disease, but to treat it successfully it must be with doctors who are experienced in treating it. Unfortunately not all doctors out there are familiar enough with this rare disease and experience can mean the difference between life and death. I’m not saying this to frighten you but rather to educate you to MM and what we see and hear every day with this disease. We know what MMD is capable of, and with any research, you too will learn these facts. Red flags should be popping up everywhere, and unfortunately YOU have to be the one fighting to get the proper treatment. You may have very good doctors with good intentions, but with this disease, it’s experience and knowing the proper approach that will save your husband, and I have to tell you, from all you’ve told us so far, these doctors do NOT have much experience in treating this disease.

If you get copies of his angio and send them to a MM specialist for a second opinion, his expert opinion may also help to convince your insurance company and your treating neuro’s, of the severity of his condition.

My best advice to you is to get your husband out of there ASAP and to an experienced MM neurosurgeon or you’re right, the nightmare will continue. This is a progressive disease, which means his arteries will continue to narrow and only get worse, and with a 90% blockage, it doesn’t get much worse than that, and surgery is the ONLY successful treatment for this disease to get him the blood flow he needs to avoid that inevitable stroke or hemorrhage.

My prayers are with you.

Mar

From what I was told and I am not a docotor... Stents are to open the path and need a good wall to grab a hold of. With MM our vessels are small and week so a stent doesn't have enough to grab hold of. Also I was told that they have not fully tested the quality of the stent over a long period of time. example what if a stent was put into a 19 year old would it go bad around when they turn 80?

Agian i am not a docotor.
Becky