Mary, not sure which daughter you're referring to, but I'll put in my two cents. Maddie has not had any more strokes since surgery. She does still have TIAs,...
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Anne Eason
maggie241015
Feb 18, 2003 1:50 am
Thanks for your reply. I'm glad to say my daughter is doing fine. We too, are at about a two year mark from the surgery. Hers was done at Children's...
141
oneofakindco
Mar 25, 2003 3:52 am
Hi, I found this site through DJ's site moyamoya.com. My 11-year-old son, Tyler, was recently thought to have Moya Moya. He was born with mild Cerebral Palsy,...
142
oneofakindco
Mar 25, 2003 2:38 pm
Dr. Steinberg is going to look at Tylers test. Wish us luck!...
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mandy harmon
harmonmandy
Mar 25, 2003 4:38 pm
Flight angel will help with flights for surgery also small airports have pilots that will fly patients free for medical reasons. Mandy Fly angel does require...
144
dareinhart@...
dareinhart
Mar 25, 2003 5:04 pm
--Glad to hear that Dr. Steinberg is going to look at your son's test results. I'm sure if you sent an e-mail to Dr. Scott at Boston Children's, he would look...
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Rena
oneofakindco
Mar 25, 2003 5:31 pm
Mandy, Thank you for the information. Rena mandy harmon <HarmonMandy@...> wrote:Flight angel will help with flights for surgery also small airports...
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Rhonda Gasiorowski
lovemom355044
Mar 26, 2003 12:09 am
Where is Dr. Steinberg from? Rhonda [Non-text portions of this message have been removed]...
147
RGrace5@...
mg12061
Mar 26, 2003 1:11 am
I wish you the best of luck and will keep your family in our prayers.My daughter had surgery in Boston one year ago,she was 5 at the time. Previous to that...
148
Rena
oneofakindco
Mar 26, 2003 2:36 am
Rhonda, He's in Stanford CA. There is a link to his site and email on www.moyamoya.com if you need anymore info, it's a great site and helped me alot. Rena ...
149
katdogden
Mar 28, 2003 11:58 pm
... www.moyamoya.com if you need anymore info, it's a great site and helped me alot. ... from? Rhonda ... Service. ... desktop! ... I hope all goes well...
150
djkrn2000
Mar 31, 2003 1:35 am
... listen ... side. ... his ... Anyways, ... be ... Rena- I have to let you know about the Dr who treated our son,Geoff, he was diagnosed when he was 12 with...
151
Richard W. Bates
richb8s
Mar 31, 2003 6:17 pm
Rena, If you haven't already done so- check out http://www.moyamoya.com/. it will explain allot of your questions. If you live in CO it would be allot easier...
152
mikeiz12
Apr 1, 2003 1:07 am
Hi Rena, I am so sorry to hear of your troubles. My son was diagnosed with MM a year ago. We luckily live very close to Boston and took Charlie to...
153
oneofakindco
Apr 11, 2003 12:36 pm
I finally found a doctor that , although he had never seen a case of MM, did enough research to explain the pros and cons of both the indirect and the direct...
154
kathyvanmeter@...
katdogden
Apr 11, 2003 7:58 pm
Hi Rena: I'm glad you got an explanation. Steinberg sends all kinds of info on both procedures after he reviews tests. My son had the direct (STA-MCA)...
155
allyssasmommy
Apr 12, 2003 10:00 pm
Hi everyone! Our 3 year old daughter Allyssa was diagnoised a month ago with Moyamoya after she suffered a stroke which left her weak on her right side of her...
156
miska_33
Apr 13, 2003 1:47 am
Hello Annette. I am Melissa and I am from Arkansas. I have a daughter who has Moya Moya. She was diagnoised at 10 months old after having 4 strokes. She...
157
pmteet@...
pmteet
Apr 13, 2003 2:04 am
Hi My daughter 6 had several strokes at age 2 1/2. The neurologist knew the moment he saw the MRA that she had Moya MOya. We used a local surgeon. He is a...
158
djkrn2000
Apr 14, 2003 4:01 pm
... normal. ... trying ... them ... you ... to ... Alyssa's mom- I understand what you are going through. This is a very difficult time for you. We did raise...
159
dareinhart@...
dareinhart
Apr 14, 2003 6:11 pm
... was six when she was diagnosed and it's amazing how quickly you are thrust into a world where you need to make life and death decisions. My daughter's...
160
Anne Eason
maggie241015
Apr 14, 2003 10:33 pm
So sorry to hear about your daughter. My daughter was diagnosed 2 years ago at age 12. She had both surgeries at our local Children's Hospital in Cincinnati,...
161
pmteet@...
pmteet
Apr 15, 2003 12:31 am
HI I read what you said about you and your daughter having a good time. LOL That is the case with us too. My daughter has had a total of 4 surgeries. She...
162
mandy harmon
harmonmandy
Apr 16, 2003 2:25 pm
Our peditrician also wrote a note as to why we needed to go to Dr Scott. Since we live so far away we do not travel yearly to Dr Scott. We send him copies of...
163
xiaoming54
Apr 21, 2003 7:45 pm
My five-year-old son was diagnosed with MM last week by Dr. Scott in Boston. We are now anxiously waiting a date for surgery. He has only had one TIA in...
164
leilei543
Apr 21, 2003 8:06 pm
Hi Ginny, Here is a link to a site that has a listing of books that you and your child can read to prepare for the hospital stay: ...
165
trekkierick2002
Apr 21, 2003 8:08 pm
Ginny, My three-year old daughter is having surgery in three weeks in Boston. We got her a book called 'Franklin Goes To The Hospital'. It's a fantastic book...
166
xiaoming54
Apr 22, 2003 10:55 am
Thanks so much for the book suggestions. Ginny...
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oneofakindco
May 18, 2003 2:51 pm
Finally, got approval for Tyler to go to CA for his surgery. We have to be there June 16th and the first surgery will be the 18th. The second surgey will be...
168
chbrigger
May 19, 2003 12:33 pm
What great news. We will be thinking of you and praying for Tyler. Keep us posted. Heather (Mom to Erik-7 1/2yrs and Katie 6 yrs both with Moyamoya and big...
