Hello everyone, my fiance and i just found out that it is likely that he has moyamoya. He had multiple MRI's and an angiogram confirmed that he has one completely blocked vessel and another one that is 90% blocked. My questions are.

Is this genetic?? We already have a 2 year old daughter, should she be tested or wait and see if she shows symptoms as she gets older? Also should we not have any more children due to the risk of them possibly getting this disease?

Also, what can we expect if they want to do surgery, (which im almost positive they will) Is the procedure very risky? Does the procedure have a good chance of fixing things? and how long from now until we can expect to be getting the surgery? He hasn't had any strokes yet, so i would obviously want the surgery done before anything like that happens!

As for my fiance, We are supposed to be getting married in only one month Is it possible for him to be feeling ok for the day or will be have to postpone... Also do people with MM have a normal life expectancy and things like that if surgery cures the vessels?? ( or veins, arteries ) Thank you so much for all of your help and answers ahead of time!

I know you must have a lot of questions and I'm sure you are feeling very overwhelmed.  My best advise is make sure you have a doctor that is very experienced with Moyamoya.  Next do a lot of reading.  There is a lot of good information and advice on this website. 

As far as it being genetic, I think it is safe to say sometimes it is and sometimes it isn't.  There are studies being don on that very subject.  The guest speaker for our Moyamoya get together in Kansas City next month is doing a study at Univ. of Texas.  I am anxious to see what they have found.

Surgery...there are several different kinds.  Your husbands surgeon will have to determine which kind is best for him.  Again there is a lot of good information on this site...thanks to DJ.  Every one's recovery time is different.  My daughter had hers during Christmas break in her freshman year of high school.  She went right back to school when break was over.  Looking back she should have taken a little more time to heal but she did well.  she still has headaches...which is how we found her moyamoya.  She hasn't had a stroke wither.  I'm glad she had the surgery before she had one.

As for being ready for the wedding, well there is just no way to predict.  Personally, unless your doctor tells you otherwise, I would go on with life as usual.  I don't think you can live waiting for the shoe to drop.  Drink lots of water, don't over do it and just do what your doctor says.

As for living a normal life, there are things that you might have to give up...SCUBA, skydiving, etc.  but my daughters life is pretty darn normal.

Good luck and if you have questions just ask.

Donna

Thank-you all so much for all the posts! It really gives me hope that we can still have our normal family back We live in Wisconsin, so their are no surgeons in our area that have experience with MoyaMoya. We are waiting to hear back from our Nurologist about scheduling an appt either at the University of Minnesota with Dr. Nussbaum sp? or in Rochester with Dr. Meyer. I've read up on both and both surgeons seem to have a good understanding of MoyaMoya and are very succesfull with their surgeries, which is reassuring! I'm hoping we can meet with one of the surgeons as soon as possible and hopefully get the surgery done before the wedding, so he can have time to heal!

One other question I have is, being that he has two seperate vessels that are clogged. Both in the back of his head, but one on each side. Will they perfrom the surgery on both vessels at the same time, or is it more likely that they will do two seperate surgeries?

MM mom, i sent you a personal message about some questions I have for you, thanks in advance!

We just got the call saying that his appointment will be this coming Wednesday, in Rochester. We will be meeting with the top nurologist their and he will let us know for sure if it is moyamoya. I'm assuming we will be going through a bunch of testing there and hopefully surgery will be scheduled for next week as well. As for now we are planning to keep our wedding date, inless the surgery gets scheduled for a later time (too close to the wedding) or if the doc says otherwise. Pray for quick surgery, quick recovery, and hopefully only one surgery at this point!

Wow, I didnt realize there were so many people with MM so close to me! We are in Rockford, IL. My son was diagnosed with MM at 18 months old and had his surgery in Boston at 2 years old. He is going to be 4 this summer and doing great!!!