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...
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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...
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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...
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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...
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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,...
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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...
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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...
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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: ...
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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...
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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...
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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...
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olive_turley
Jun 3, 2003 10:04 am
My niece of 20 months was diagnosed with Moya Moya yesterday in the UK. Do any of you have websites for US treatment centres with # of operations carried out...
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Rena
oneofakindco
Jun 3, 2003 12:43 pm
Olive, www.moyamoya.com is a Great site for support and info. There are links to other sites, however I'm not sure if the numbers are posted on any of them. I...
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olive_turley
Jun 3, 2003 2:00 pm
Rena, Thanks for this. Sorry to hear about your son and the best of luck for june 18th. Are you based in the US or are you travelling to the US for surgery? ...
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xiaoming54
Jun 3, 2003 2:10 pm
Hi Olive -- my five year old son was recently diagnosed with moyamoya & operated on by Dr. Scott in Boston only 3 weeks ago. [We live in Massachusetts so it...
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Rena
oneofakindco
Jun 3, 2003 2:38 pm
Olive, There are two different types of surgeries. The one Ginny is talking about (indirect) is easiest for the doctor to preform, is very effective, and does...
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olive_turley
Jun 3, 2003 3:26 pm
Thanks for all your help. I'll pass onto my sister and her husband. Her daughter is having more tests today and tomorrow so I might be back with more...
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djkrn2000
Jun 3, 2003 3:27 pm
... the ... of ... I have read all of the messages attached to this one, and I am sorry for your neice's diagnosis, but the good news is that the treatments ...
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chbrigger
Jun 3, 2003 6:10 pm
Dear Olive, I have two children with moyamoya and they both had surgery with Dr. Scott in Boston. I would recommend calling him, as he could tell you if there...
177
pmteet@...
pmteet
Jun 4, 2003 1:00 pm
HI I would like to see if you all agree with me or not. Maybe I am missing some info. I was under the assumption that MM kids should get MRA's every year...
178
dareinhart@...
dareinhart
Jun 4, 2003 1:15 pm
Hi, my daughter, almost 11, had her surgery a little over four years ago. She had an angiogram a year post op, and has had an MRI in subsequent years. She...
179
momtoplsd
Jun 5, 2003 2:41 am
I'm so glad I found you all... Hi My name is Kathy and my son Daniel (4) had surgery in Boston, with Dr. Scott, last week (5/27). Dr. Scott is awesome and...
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mandy harmon
harmonmandy
Jun 5, 2003 3:22 am
We have done follow up mri/mras at our local Drs. hospital of choice Then we would request the hospital mail a copy of the films to Dr Scott. Mandy ... ...
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chbrigger
Jun 6, 2003 11:09 am
Kathy, We do our follow up MRI/MRA's at Children's National in D.C. I discussed it with Dr. Scott and he felt comfortable having them done here and then sent...
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Richard W. Bates
richb8s
Jun 9, 2003 1:55 am
Hello all, My granddaughter was at Boston Children's Hospital as Ginny's son. In fact Dr. Scott operated on her in the morning and Ginny's son that afternoon....
