Hi. Does anybody know the risk that a child of an adult moyamoya victim will also develop the condition? Thanks.

Hi El, welcome to our moyamoya family.  We are all wondering that same question.  I have two sons ages 7 and 6.  I had my boys before I found out about my moyamoya.  My first son was premature and is now behind in school.  I don't know if it has anything to do with the moyamoya or not.  I joined the  genetic testing group from the University of Texas but we haven't heard anything back.  It  took a long time just to send my samples there.  I know that this doesn't give you any answers.  Sorry.  Just know that we are all here for you.
                              Best of luck,  Newt(Natalie)

Hi El,
One of the very difficult issues with rare conditions is the lack of definitive answers. There appears to be a genetic link but I've not seen any information which assigns a risk level to passing this along to your children. The conventinal wisdom seems to be to watch them for symptoms. One very specific symptom which I've encountered personally  is numbness or paralysis in the limbs following hyperventilation. eg. crying, blowing up balloons, playing wind instruments. One of my doctors told me that in Japan, children have been known to have symptoms from slurping up noodles.  I hope the best for you.

Russ

I had surgeries with Dr. Gary Steinberg on Oct 31 and Nov 7 this year and am worried about the hereditary link as well. My son, David (who is 36), had a few dizzy spells; because of moyamoya his doctor sent him in for a MRI/MRA last Wednesday. He got the results today - the good news is he DOES NOT have moyamoya, but he does have a developmental venous anomaly (a venous angioma). His doctor has made an appointment with Dr. David Newell here in Seattle at the Seattle Neuroscience Institute at Swedish Medical Center on Jan 7th (Dr. Newell is a neurosurgeon who has performed about 200 by-pass surgeries for moyamoya). I also faxed his MRI/MRA report to Dr. Steinberg's office this morning. Now we wait - seems I've been here before. From what we've read on the internet, I don't think we have anything to worry about, but I do wonder how many of us with moyamoya disease have family members who have either moyamoya or some other brain abnormality. My maternal grandmother was diagnosed with Altzheimer's, before the time of MRI/MRA diagnostics, many of my family believe she may have had many small, silent strokes, who knows maybe she had moyamoya. I know that I have at least two normal but rare developmental variants in other veins and arteries in my body - is this a common theme among those with moyamoya disease?
Kim

Don't know what to think - my mom died of a stroke 18 years ago but had constant headaches and myalgia. My oldest son is autistic
Moira

Hey Kim,
    I have moyamoya vessels in my brain but I also have abnormal vessels in and around my kidneys.  It is called Fibro-muscular-dysplasia.  It isn't nearly as bad as the MM.  Sometimes I just go to the bathroom more often. ;)
                              Newt(Natalie)

 This a big question for a lot of us I guess.I've always wondered like Kim mentioned how many family members have had neurovascular issues that could have either been MM or related to it in some way. My 10 yr old daughter has mm,and my side of the family has a lot of neurovascular issues.My dad died from the rupture of a Circle of Willis aneurism at 52,My sister was operated on 10 yrs ago for the same type of aneurism,my grandmother was diagnosed with the same aneurism very late in life BUT all her life had suffered from headaches,and what we know know were most likely TIA"S, seizures,and possibley a strokes, they reffered to all fo this as her "spells", and never really took it seriously.Many of my imediate and extended family suffer from migranes.There were others in my extended family that have ahd strokes at not a very old age also.It just seems way to coincidental to have all of this in our history.I don't worry too much about it but I would certainly act on any little symptom that apeared in my other children or myself.
Mary Grace