i have a daughter that was just diagnosed with moya moya.  wow..what a shock, we have Dr. Steinberg as her surgeon, we met with him on monday of this week, and he is planning to do the operations on the 18th and 26th.  He expects she will do well...we are just praying that she doesn't have a stroke before then, she has been having mild TIA's at times...and sometimes some stronger ones...so far no evidence of any bleeding, the angiogram was done a little over a week ago, He wants to do a blood flow study and might need to redo the angiogram that was done at another hospital.

We wish you all well, and will pray for everyone
Hillary

Hi Hillary;

Completely understand what you mean when you say WOW WHAT A SHOCK. How old is your daughter and was she healthy up untill this point? Our families thoughts and prayers are with you and your daughter.
   Carol

Carol and Hillary,
                Wow isn't the word. My daughter was 20 at the time perfectly healthy engaged had a house she lived in she was buying already going to college and working at a bank when boom it all came to a halt and she lost it all because of this disease and now lives with me and is no longer engaged and may (probably) will never work again, so be gratefull if you've caught this disease early before major strokes because its a long journey back. I hope I didn't scare you all but this is a devistating disease.....so catch it early is the name of the game, I just wish there were an easier way to do that.
                         Nancy

my daughter..holly is 9 has had the tia's since august last year, very active little girl into sports, and a very good student.  right now she is out of school and being taught through the home instruction program, different from home schooling...we have a teacher that will come to the house a few times a week and work with her....i think the stress level at school is to high right now for her to go...they are starting their state testing in 2 wks..her school has started a little fundraising thing to help with the travel expenses and lost time from work throughout all of this....we have a lot of support through family and friends here locally and its nice to be able to talk to you all here...

Hillary, You are certainly headed in the right direction.As everyone has stated you are very lucky to have found this disease without haveing suffered a stroke.My daughter is now seven abd has been stroke free for 2 yrs now.But only after haveing survived 5 strokes. Your family will be in my prayers.
Mary Grace

hey i just wanted to share, we just got word that holly's next test will be done next week on the 4th and the 5th for the brain spec scan, i think thats what they called it.  anyone seems things are moving along...

hillary