Hi all,

Our little son Alexander will most likely be operated for his MMD within the next couple of months by specialists in Berlin.

I have been reading hundreds of posts in this forum, but I still have a nagging (more like terrifying) question:
What are the long-term perspectives after surgery? Has anyone been told that even with surgery life expectancy is not that high? Can we expect to hear that the surgery is only a "patch" to solve this problem here and now, but that we will be facing it again in the future?

All the stories I read here are from people that are more or less recently operated on... I do not know if this is because the disease is "new", if people disappear from the forum once they resume a more "normal" life, etc etc...

He's only 19 months old... and I want to reassure myself that he will grow to be old and have a family...

Thanks in advance for your help!

Ayelén

Ayelen,
Best of luck to little Alexander.  I have heard that each case is different, and may depend on the person's condition at the time of surgery.  My son had surgery when he was three and is now almost 5.  I remember a woman posting about her son who had surgery when he was 7, and he is now 18 or so now and even played high school football.  Also, I think I saw on the web page for  Boston's Children's Hospital (or maybe Stanford), there are patients who have gone on to have their own children later in life.
I hope everything goes well with the surgery.
Kelley (mom of Gray)

Ayelen,
Welcome to the family! I was 22 when I was diagnosed and I am 31 now. I am an Electrical Engineer for a major company. I finished my collage 1 year after my surgery. I am able to do most things a "normal" person can do. My Husband and I are even think about having kids. I may not be able to skydive or SCUBA dive.  My surgery left me with a softspot so I am careful about getting that hit.
I agree with Kelley in that everyone is different; like the football player must not have had the same surgery as I did. There are all different kinds of revascularization surgery that help sustain the blood flow. Which is why we highly recommend a Moyamoya experienced doctor.

Moyamoya will never go away and it is progressive (as far as I have read) but a person may only need one surgery and they will be fine for the rest of their life. All people with Moyamoya get an MIR/MRA/Angio every once and a while to check up on how the blood flow is flowing. I get one every 5 years per my Neurologist instructions but I also keep a journal on how I am doing and if there is anything I am worried about my neurologist will see me.

I hope this answered your questions. Please keep us posted on Alexander. Please feel free to ask more questions. Knowledge is power when it cones to this disorder.
Becky