My daughter is 10 and says every once in a while she hears, and feels a wooshing in her head.  She has had both sides of her brain done with Dr. Scott at Children's of Boston.  Last night though it happened 4 times in a row.

She also sat on her legs, and it went to pins and needles.  With her it took like a half an hour to get back to normal.  I know the veins and arteries with this disease decrease the size of them.

Any similiar issues?

Hey Doug!

Long time no see!  How is Hannah doing in general?

I have whooshing A LOT!  I had it before surgery and then it went away immediately after surgery.  It started up again approximately one year later.  My neuro told me not to worry about it but I do.  I will be having another angio in October at Stanford so maybe I'll find out why, or at least be reassured that it's really nothing to worry about.  More than anything though, it's just really annoying!    Especially when I'm trying to sleep and it happens.   I also have pins and needles- daily.  Again, very annoying although I'm getting so used to all that now that I barely notice it anymore.  Not that it doesn't worry me.  Has Hannah had any follow-up tests done lately?

Come around more often will ya!?!? 

Lisa

Hi There!

I get the whoosing too. There was a post on it on the MGH Moya Moya webforum a few years ago when I first started looking for Moya Moya info on the internet. I tried looking for that post before I came here to post this but cannot find it. It was sometime back in 1999/2000.
I've had the surgeries done - ECIC revascularisation bypass on both side. The whooshing usually happens when I'm lying down with either side of my temples on the pillow, before I go to sleep. It doesn't happen every night - only occasionally. It can also happen when I get up too quickly aswell - again, this is only every now and then.

I think (but I'm not sure) that everyone else can hear this whooshing if you have one of those Doppler tests done (I think it's the Doppler test - it's like an ultrasound of your head). The different pitches of whooshing relates to the different amounts of blood flowing through the different arteries (the whooshing sounds different in an artery that's narrow). Well, that was what I remember being told years ago, when I was first diagnosed. I haven't had another one of those tests done since, so I don't actually know if the whoosing that I get now is related to what I heard that day - I am only making an assumption.

I am interested to know what Dr Scott makes of it.

Congratulations to your daughter for getting her second degree Junior Black Belt

Best Wishes to you all,

Roselyn

Dr. Scott contacted my wife, and told her that Hannah will have to have an MRI and an angiogram.  He didn't think that it was normal from the conversation that I had with my wife.  I am a Dad and Dads are suppose to be tough, and I am an ex champion weightlifter, and am currently a martial arts instructor too.  But I have tears in my eyes right now as I am writting this.    I can admit it.  I love my daughter more than anything.  She is a female mini version of myself.  I am in a surreal world right now, stuck in a Salvador Dali painting.  I pray every day for my daughter, and our family, and others.  My family is my whole world.  Thank God I have a wonderful wife.  I figured I would add that as she reads the board. I hope it gets me points Christmas is coming.  This is a good place to vent.  I will let you all know what Dr. Scott has to say after his consult with her as she has her yearly angiogram anyway.  Thank you for your support.  The best of health to you all.