I was diagnosed with MoyaMoya in 2005 I underwent a Bilateral Bypass on the right side of my brain exactly a year from that day in 2006 I underwent a bilateral bypass on the left side of my brain . In 2007 I was diagnosed with carinary artery disease I had 3 iliac  stents put in in . March of this year I was showing signs of my moyamoya returning slurred speech , loss of balance , Dr. robert Mericle is my Doctor out of Vanderbuilt medical center in nAshville tennessee specializes in Moya Moya underwent a series of test to see if another surgery could be proformed but when the tests were complete I recieved the worst news ever that there was nothing that could be done an all I can do is continue with my meds that is my only option an my arteries are too brittle and surgery would be certain death. So I live my life day to day hoping to live another day , I have good days an bad days. The Doctor told me that I have 2 years at best , when researching the condition my vessels an arteries are in an each day I feel myself going further down hill. This is an awful disease.My hope an prayers go out to all that is effected by Moyamoya .

Hey Chris

I'm terribly sorry to hear of your situation; this must be a very difficult reality to have to confront.

I'm not sure of the exact details of your situation or doctors, but perhaps it's worth getting another opinion from a moyamoya expert?

Stay strong
Mark (Luca's Dad)

Hi Christopher - I'm very sorry to hear about the troubles you are going through.  All I can say is - Moyamoya is NOT a death sentence.  You need to get yourself to a neurosurgeon who specializes in moyamoya.  There have been plenty of cases here where doctors who are not familiar with MM have given a poor prognosis.  But - they - are - wrong!!

Please, I beg you to go to a neuro who is familiar with MM.  There is a section on this board that can help guide you to an appropriate doctor:

http://www.moyamoya.com/cgi-bin/yabb2/YaBB.pl?board=surgeons_board

You are your best advocate - go out there and fight!

-Shari

Christopher,
I am sorry to hear of your troubles. I do fully agree with Shari. MoyaMoya is Not a death sentence. I personally was told it was totally impossible for me to have Moyamoya because i am not Asian. Well needless to say I found a doctor on this web sight and got the second opinion. Well I do have moyamoya and I had the corrective surgery that is needed for my variation. Maybe your neurosurgeon did do a surgery but it may not have been the correct surgery for your Moyamoya. This is why we all stress the importance of finding a recommended surgeon/neurologist on the link Shari gave.

I hope you will get the second opinion and fight for your life!!
Becky

Concur with the above, and I have coronary artery disease along with MMD and have had six stents placed in my coronary arteries. Doctors who give life expectancies should have their licenses pulled. Never, ever give up.

Christopher,

I am so sorry to hear of your situation.  I can't imagine how difficult it is for you.

Please listen to the other posts here and see a moyamoya specialist.  I'm not sure where you live, but I highly recommend Dr Scott in Boston.

Hi Chris,

There must be something for me to read your message, as I haven't visited this site since long time ago.

As other people suggested, you should have second, or even third opinion about your situation. For what ever result, be positive as you still have at least 2 years and should not just wait for some scared thing to come to you. If you are still working, pls reduce your workload and find way and place to relaxation for both your mind and body. Try meditation, breathing and light excercise such as taichi, yoga ("true one"), a healthy diet and peaceful, positive environment could also help. It's from my own experience after several years with Moyamoya.

It seems that we have some similarity. I did the surgery in May, the same year as you, also in the right side. I was studying at Vanderbilt when being diagnosed with Moyamoya, left side also have early symptom. I was checked by Dr. Mericle there and also had second opinion from Dr. Steinberg and third opinion from a very good Japanese Dr. at Duke Medical Center. They had different opinions then. Finally I flied to have the surgery at Stanford , partially because my relatives were in Cali and they could take good care of me after the surgery. Then I moved back to Vietnam, my home country. Eventhough my first year check up in Hongkong was good, the numbness still came back sometimes. I know that it's almost impossible for me to take another surgery in the State or regular yearly check up because they are costly and I also don't want any more surgery. Since then, I have decided to find way, other way to first cure myself, at least preventing the further developing symptom in the left side, and then helping people with Moyamoya, if I succeed. I stopped taking aspirins, they have side effects, and took chinese medicines instead, those have effects on blood circulation and continue with more excerises which I mentioned above. I changed my job, have studied traditional medicines, accupuncture,... and checked what I did on good days and bad days. I recognised that a busy and stressful life, heavy excercises, even running, little alcohol,... all make the symptoms come back.  However recently, I have started to experience more numbness, my mind is also a bit blurred . (after the surgery, it became clear). To make the story short, I am still working on adjusting my life style, work and environment... There's always way out. Plse email me  if you want to discuss. I'll keep praying for you.

Take care,

Ha

Christopher--

I don't think any of us here haven't felt at one point or another that our situation was hopeless.  I spent a long time feeling that way, but you must have faith and try really hard to find the strength to continue.  Continue to research (this site is the best resource) and get a hundred opinions if you must. Just don't give up.

7 months ago, I had just about given up, then one day I found the energy to call up my insurance company and fight.  Now here I am soon to be 5 months post op and approaching my 30th birthday alive...

You are in my prayers.

Nadia

I am sorry have you tried the Barrows institute in Phoenix.
I had mine ther in 1998  I have lots of questions about life after surgery. i don't feel like I'm the same person and that was 12 yrs ago