My wife Pam suffered her first TIA stroke in April 08 at the age of 42 prior to this she was 100 percent healthy never a day in the hospital other than when our 3 boys were born.

She continued to have stroke and seizures in August her neurologist sent her to a specialist in Dallas she was diagnosed with Moya Moya and admitted to the hospital.

The second day after being admitted she suffered another stroke which she recovered from. The specialist called in a surgeon which performed several test to confirm where the blockages were occurring.

On November 20th 2008 my wife went into surgery to have a bypass done on her left side which was 100 percent blocked her right side is 75% blocked.  I will never forget November 20th Pam went into surgery with the attitude everything was going to be ok.

Pam suffered 2 strokes during surgery the bypass was unsuccessful she has been totally paralyzed since and has not responded too much of anything.

Pam is now in a long term acute care center stable as vital signs go unable to move unable to communicate with anyone. She is on constant pain medication (morphine) and has dealt with every infection you can get including MSRA.

Until November 2008 I have never heard of Moya Moya now it is on my mind all the time. After reading this forum I see there are other options for the treatment our doctors and surgeons convinced us the by pass was our only hope.

I wish I would have discovered all you great people before November 20th my wife would not have had the by pass sure gory.

Thank to all of you for sharing your information

My daughter is 34 yo and also suffered her first stroke april 2008. She was diagnosed with moyamoya sept 9 and we immediately sent all scans to Dr Steinburg at Stanford. Her first surgery on the left was Nov 5 and at that time she suffered 2 strokes on the right. Within the next week she suffered another stroke and they took her in to repair the right side. Her surgeries were successful but she was left with left side paralysis and mental deficits. She and her children are now living with me. She continues to do better with each day. I was told that it could take up to a year. They do think she will recover but the stroke damage just needs time to heal. I pray that your wife recovers with time also. I am glad my daughter had the surgeries because the alternative was worse.

Welcome Mac and Cindy,

Mac, I'm sorry to hear about Pam and my thoughts and prayers are with you all. As Mar mentioned, I wish I had the words to comfort you all. But know, you are not alone, and many have walked this same path.

Cindy, I'm sorry to hear about your brother at such a young age. I can relate well as I have taken care of my brother for the past seven years as a result of moyamoya and the lack of knowledge in the medical community about the disease and my brother ignoring some early signs.

At the age of 43, my brother had a stroke and a dissected right upper internal carotid artery. It was devastating and if that wasn't enough, he went almost 4 years mis diagnosed. As I watched him getting progressively worse, I vowed I would get to the bottom of the problem. To make a long story short, I insisted on an angiogram and the nightmare began.

The doctors had no idea what they were seeing, meaning the collateral vessels that form the "puff of smoke", known as moyamoya. The collateral vessels form in an effort to supply needed blood and oxygen to the brain due to the carotid arteries narrowing and closing. The collateral vessels are very weak and can't do the job. Because they are weak, they can cause a bleed in the brain. All the while the carotid arteries are blocked. Some are blocked more than others depending on when the disease is caught. That's why some have surgery on one side and not the other, or have both sides done within weeks of each other.

Once I got the diagnosis of moyamoya, I began to call every institution you can imagine and you can only imagine the response I got. Most had no idea what I was talking about. They had never heard of moyamoya. Then, I found this site. Thank God for DJ! I then found Dr. Steinberg at Stanford and his nurse Teresa who decided to take on my brother, given the horrific shape he was in at the time. I knew  this was my brother's only chance at life. It was truly a life saving ordeal. In May of 2005, my brother had two successful STA-MCA's by Dr. Steinberg at Stanford and today can speak and think. I never thought my brother would ever speak again or know who I was or anything else for that matter. My point being, that it is only by the grace of God and the hands of an experienced, knowledgeable and skilled neurosurgeon, and moyamoya team, that my brother is alive today and can speak and think. He actually had had two strokes and a hemorrhage from the brain. It is truly a miracle my brother is alive today. I put him in a very rigorous rehab program after his surgeries which helped to jog his mind and to gain his abstract thinking ability.

My advice is the same as Mar's. It is important to become knowledgeable about the disease and get to an experienced moyamoya doctor. I found Stanford's website on moyamoya extremely helpful to me in educating myself about the surgical treatment of the disease and the tell tale signs of the disease.

In retrospect, my brother had signs of moyamoya that he ignored simply because the symptoms went away.  For instance, numbing and tingling in his extremities and then TIA's which are mini strokes. Had I known that at the time, I would have insisted he seek medical treatment immediately.

The one thing I find odd about this disease, is it can strike a very young baby but may not strike an adult until they are in their 30's 40's or 50's.

I too am like Mar in that if I can save one person from the trauma, grief and devastation associated with this disease, that's my mission.

Because my brother went misdiagnosed for so long, I am his durable power of attorney. He lives on his own now, but that only happened within the past year.   I still continue to handle his affairs because he is vulnerable to being taken advantage of by others. He certainly has come a long way but it has been a long, hard and painful journey. All of this may very well have been avoided had my brother heeded the signs and the medical community take note of this disease and become knowledgeable about the disease.

The one thing that keeps me going is the moyamoya family. They are great! I could not do this daily without them. Their support, love, caring and advice are immeasurable and I am eternally grateful to have such a family.

I hope by sharing my brother's story, you will know you are not alone and is of some help for you moving forward and next steps.

Please know we are here for you and please ask any questions.

You are all in my thoughts and prayers.

God bless,

Lore

Cindy,
I would have him see a nurologest to aprove his ability to travel. He may even have to take a train or a buss to get to bosten if he can't fly. I wish you and your brother the best. I will pray for him to bable to go to you.
I hope this helps,
Becky

Cindy, 
    I am very sorry to hear about your brother.  My wife is 29 and was diagnosed with mm in Sept 08.  We were told to wait and monitor it like so many others on this site.  We researched it and realized that we had to act fast being that it is a proggresive disease.  We also learned that each case is different and that the proggression rates vary from person to person. 
     We live in Philly and found that no one here specialized in mm.  We chose to see Dr. Scott in Boston in Oct.  He confirmed it and she was scheduled for surgery the end of dec 08.  She has had both surgeries performed by Dr. Scott and she is doing great.  He is really an amazing person.  The entire team is top notch.  They made a very difficult situation bearable for not only my wife but for myself as well.  I know how hard it is to feel powerless when it comes to helping the one you love. If you have any questions about Dr. Scott, the surgeries, appointments or anything i would be more than happy to answer them.  My email is trol360@aol.com.  Please feel free to email me. I truley believe Dr. Scott saved my wife's life.   

You are in our thoughts and prayers
  Terry

Just a few points of clarification...

The bypass is treating a symptom, which is lower amount of blood flow (profusion) to the brain.  The lower amount of profusion / blood flow is caused by MMD, the narrowing of the arteries.

The limited of blood flow / profusion is what causes the strokes.  There are essentially 3 ways a stroke will occur, the first is a blockage (thus causing even less blood to flow), a rupture in a vessel and the third is a "water shed" stroke.

The bypass is the #1 tool for increasing blood flow and QUICKLY!!  In children they will sometimes try a bit less aggressive bypass / because their brains are more active about creating bypasses on their own.

So Cindi, when you ask, what are the alternatives...the real question is what is the profusion / amount of blood going to his brain and based on the fact he has had a fairly major stroke, we must assume it is too little.  (Blood profusion test would prove this but he may not want to even wait for that test / move immed towards surgery if recommended by Dr Steinberg or others)

Therefore surgery IS the option that increases blood profusion to the needed areas and you and the family will want to contact a surgeon that is VERY familar with this bypass and if nothing else, get the scans to Dr Steinberg, he is referred to here pretty often.

One last point...the surgery does NOT prevent strokes, but does lower the immediate risk.  But as you can read, when the problem prevents itself, time can be of the essence, the body is already starving for blood in the brain.

This is a life long disease, the surgery will certainly improve the blood flow, but since it is progressive, it is something to watch out for the rest of their lives.  (If they start having TIAs for instance, certainly a warning sign/needs to be followed up on)

I will keep you guys in our prayers, especially Mac and Pam, my heart goes out to you brother.

Elaine,  I had both Dr. Steinberg at Stanford and Dr. Lewis at Shands look at my daughters MRA and angio results.  We live and Tampa and heard wonderful things about Dr. Lewis so we decided to forgo the long trip and stay close to home.  Dr. Lewis had done quite a few MM surgeries...guess the word got out about him.  The hospital and staff were wonderful.  I highly recommend  him and Shands if you want to stay close to home.  his number is 1-352-273-9000.  If you have any questions email me at djinkster@aol.com

The bypass surgery restores blood flow providing an immediate vehicle for necessary oxygen and nutrients to reach a starved brain due to the carotid arteries narrowing and closing causing blockage and reducing the necessary blood flow in the brain.

The bypass not only provides the immediate necessary blood flow, it puts you on a level playing field in terms of having a future stroke. After the surgery, you stand the same chance as anyone of having a future stroke depending on a number of factors including lifestyle choices.  

As Kim mentioned, with or without Moyamoya, we all play a part in keeping ourselves stroke free by making healthy lifestyle choices to reduce our risk of strokes or future strokes and heeding the warning signs of a stroke.

My brother had both STA-MCA bypasses in 2005 and hasn't had a TIA or stroke and that will soon be 4 years. He doesn't expect to have another stroke either. Prior to the surgeries, he had two strokes, a dissected right upper internal carotid artery, and a hemorrhage. Without the surgeries, surely my brother would not be here today.

Lore

mac8506,
I would get a second opinion. Yes surgery is risky and there is a chance Pam could have a stroke during it. BUT the stroke she could have later could be worse. In my case I had a stroke before i was diagnosed. I was being torchured with tests so they could figure out  why I had a stroke. It wasn't untill a nuroradiologest sugessted MM that the nurologest at the time said impossible since I was not asian that I got a second opinion. My speach and strength were going down hill fast for the six months before i went to the mayo clinic in MN. The nurologest there just looked at one slide of an angiogram and asked when I would like to scheual my surgery (after one more test to conferm). The nuorologest explained all the risks and all of the precentages you have posted. I was on blood thinners and had to wait 2 months before I had my surgery. During that time keept getting worse. After the surgery my family saw almost imediate inprovement after about 3 weeks of recovery. I now had a new nurologest who knows his stuff. Sorry I rambeled on about me but Get a second opinion. Surgery is the best way to prevent any future strokes and inprove Pam's way of life. More Blood flow means more oxygen which means more ability to recover. Pam's brain will be able to work around the shorts she now has and with more blood flow she could recover all the way or just a bit depending on the dammage. I was able to recover 98% I still have verbal issues when I am tiered and my body doesn't work when I am extreemy fatigued. My grip just gives  out and I have a limp but I know know the limitations so I don't alow my self to get that sleepy.

Please get the second opinion or talke to Dr. Stinberg.  God has a plan for you and Pam. I beileve Pam still has more to do here. I will pray for you to find giudence and Pam for a speedy recovery.
Becky

Hi Mac8506,
What has happened to Pam is terrible. I am so very, very sorry. You and Pam are facing what we all fear most. Stay strong and insist that her doctor gives you an explanation for the treatment decisions being made for her. If you don't understand, ask him to repeat his explanation using words that you can understand. There is absolutely no reason that a doctor should be unable to answer the questions that you've posed here. Personally, I'd seek a second opinion anyways, why not?
Best wishes to you both, you're in my prayers.
Kim