Had to take Destin in to the ER last Saturday.  Looks like it was a TIA.  She weak all over very sudenly and her mouth drooped on the left when she smiled.  Docs said that would indicate a problem on the right side of the brain. They did an MRI and confirmed it ws not a stroke.  Then they did a cerebralangiogram and discovered that the Moyamoya has started on the left.  I was really hopeful that she one be one of those rare cases that was only on one side.  She is a mess.  Trying to finish up her senior year in high school.  Really looking forward to college next fall and now this.  Her smile was crooked again on Thursday.  I called the neurologists that saw her in the hospital and left messages.  They never called back.  I didn't feel it was necessary to rush her back to the ER.  How do you make that call?  I know lots of you have TIA's and I'm assuming you don't go to the hospital everytime.  She missed another week of school.  Her teachers are being very supportive.  Don't know how far the Moyamoya has progressed.  Doesn't sound like it's bad yet.  The right side (surgery) looks good so we don't know why the left side of the face is affected.  Thanks for letting me vent!!!!!

Donna and Destin, 

We're thinking of you!!  We're so sorry to hear the news, but are keeping our fingers crossed.  The girls said to tell Destin that if she does have surgery, we'll come down and hold her hand!!  The girls really want to talk to her, so we'll call soon!!  Hugs!!  Kristen

Kristen...guess the girls have texting.  I am so glad they met this summer! 

Shari...we're [lanning to be in Orlando the nights of 21 and 22 so I won't be able to talk then.  Should be available tonight and Friday night if you see this message in time.  Otherwise I'm usually available.  Destin has only met Dr. V once but we plan to start seeing him.  Her surgeon is at Shands in Gainesville.  I will have to wait and see what we think of Dr. V.  What we have seen so far we like.   She loves Dr. Lewis at Shands though.  I also want to send her films to Dr. Steinberg and maybe Dr. Scott.  I don't think her right side has progressed very far but then I'm not the expert.  She just doesn't want to spend her first year in college feeling like a time bomb.

Hi Shari,  we agree.  BUT Destin refuses to ruin christmas so we have an appointment the first week in January and I have already sent her films to Dr. Lewis.  I have to get more copies to send to Steinberg and Scott.   She had her first surgery during Christmas break. We checked out of the hospital on Christmas day and she syas she will not lose another Christmas to Moyamoya.  I asked her when (if she needs surgery now) would she choose to do it.  Her answer was "spring break"...like you can go in, have brain surgery, rest for a week and go back to finish your senior year. 

Hi Shari,  Who did Matt's first surgery?  I thought it was done at TGH.  Since I haven't talked much with Dr. V yet I really can't give an opinion.  I have met Dr. Steinberg and have heard wonderful things about him...one of not the best for Moyamoya surgery in the country.  I wouldn't hesitate to travel to have him do Destin's surgery.  2 other young ladies that live in the area traveld to see him and loved him.  Destin loved Dr. Lewis but I can see where his personality might not click with everyone.  He's also an excellent surgeon.  When Destin needs her second surgery I'm not sure where we'll go.  You have the added worry of 4 kids so CA might be a long way to go but I would sure consider it with Matt's last experience.  Tough decisions all around.  Call whenever you can.
Donna

I reread my post and I keep getting the "sides" confused...surgery was done on the right in 2008 and now we are watching the left...now that's clear I can have my coffe and maybe my brain will work better.