This is the link to the website. http://www.boston-neurosurg.org/publications/faq/moyamoyaRMS.shtml I also found it extremely informative.....Goodluck. ...
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LONNIE NORMAN
lnorman88
Jan 2, 2004 12:41 am
hello I am from Florida and we see a doctor at The University of Gainesville We started seeing DR. Mickle he left and now we are seeing Dr. Pincus I do not...
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robrakix
Jan 7, 2004 12:28 am
My grandson Xander is 6 and was diagnosed with Moyamoya about a month ago. He hasn't had a stroke but was having severe headaches and had an MRI looking for a...
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chbrigger
Jan 7, 2004 1:19 am
I would recommend having your grandson's MRI films sent to Dr. Scott to look at. From what I have been told the collateral growth is not enough to make up for...
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mdkempes@...
mdkempes
Jan 7, 2004 2:54 am
Pam, My daughter Allison is 8. She was diagnosed with Moya Moya last summer and the Neuro-surgeons at Children's Hospital in Washington DC did not think ...
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robrakix
Jan 7, 2004 4:47 pm
Thank you for the welcome! We are going to contact Dr Scott about a second opinion! My daughter has been beside herself and she is very relieved to hear that...
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Ginny McCarthy
xiaoming54
Jan 7, 2004 11:40 pm
Hi Pam -- I just want to echo the words of praise for Dr. Scott. My son, Will is also six. He was diagnosed with Moya Moya last April after an episode that...
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marlew47
Jan 8, 2004 8:45 am
First, thanks for all of the supportive and informative messages I have received from this group. I am working to have all of the information about my 14-month...
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djkrn2000
Jan 13, 2004 7:34 pm
In reply Yes I am still a member Pam, and I keep up with the messages. Dr. Scott is wonderful, as well as the Dr. in Indiannapolis that we went to. She was...
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djkrn2000
Jan 13, 2004 7:44 pm
Pam- I am the one who talked to your daughter before going to Chicago, and this is the reason that I told her about our experience, we went to two other...
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RGrace5@...
mg12061
Jan 13, 2004 9:08 pm
Pam, My daughter had surgeries with Dr.Scott almost 2 yrs ago.Before surgery she had she had a lot of new growth but it was not enough to stop the strokes. She...
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Genie Burch
genie_burch
Jan 15, 2004 8:09 pm
I just wanted to give you all an update on my niece - diagnosed shortly before Christmas. She had surgery with Dr. Scott on Monday and we were very hopeful...
337
allyssasmommy
Jan 15, 2004 9:20 pm
I am so sorry, I am in tears right now. I am heartbroken to hear this news. I don't post much but I do read and keep up. I will pray for you and your family....
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RGrace5@...
mg12061
Jan 15, 2004 9:26 pm
Genie,I am so sorry and shocked to hear of this outcome for your niece.How tragic.Please know that I will pray for your family.For the strength and ...
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tammyleeoh
Jan 15, 2004 9:29 pm
Genie, Please know that you and your family are in my prayers. God alone can carry you through this terrible time. Tammy...
340
jones6515@...
robrakix
Jan 15, 2004 10:50 pm
I know it can't help to ease your pain , but I am so sorry. I have your family in my prayers. Pam If it's true that we are here to help others, then what ...
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chbrigger
Jan 15, 2004 11:49 pm
Dear Genie, I am so sorry to hear of your niece and all that your family is going thru. It breaks my heart and I wish that there was some way we could help...
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mdkempes@...
mdkempes
Jan 16, 2004 12:20 am
Genie, When I first read your message this afternoon, I was overwhelmed and speechless. I just couldn't begin to express to you my sadness and find suitable...
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marlew47
Jan 16, 2004 10:25 am
We received an email from Dr. Scott today about our 15-month old daughter, Chloe. He confirmed she has moyamoya and surgery is set for 2/9 and 2/16. He will...
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Nancy McStravick
nancymcstravick
Jan 16, 2004 1:01 pm
My daughter, Emily, has Moyamoya. She had her 2 strokes at 18months and her surgery at 22months. She had her first surgery on a Monday and her second surgery...
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MarDanz
marlew47
Jan 16, 2004 1:36 pm
Has she had more strokes since surgery? Was it with Dr. Scott? Thanks so much for this hope!!!! ... From: Nancy McStravick To:...
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RGrace5@...
mg12061
Jan 16, 2004 2:14 pm
My daughter wasn't as young as yours but she was in a very unstable condition for surgery.She had had a stroke just the day before(on our way to Boston ...
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Nancy McStravick
nancymcstravick
Jan 16, 2004 2:14 pm
No, she has not had any strokes since the surgery. It was not with Dr. Scott as we live in the UK. We had the surgery done in Great Ormond Street in the UK. We...
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jane wood
ginger090177
Jan 16, 2004 9:16 pm
Hi My heart goes out to you at this troubled time. My name is Jane I live in the UK my daughter Chloe was diagnosed with moya-moya when she was 1 years old....
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dareinhart@...
dareinhart
Jan 17, 2004 2:28 am
Genie, I am so very sorry about your niece. Your family will be in my and my families' prayers. I too, feel it is so caring and generous of your sister to ...
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pmteet@...
pmteet
Jan 17, 2004 4:07 am
Hi I have not been able to post because my computer has been down. I am hoping
to become a more active member now. My daughter started having strokes at 2 1/2...
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mandy harmon
harmonmandy
Feb 14, 2004 4:05 am
migraines have been reported as a symptom. I know in adults moya moya can cause aunirisims. I was told with my child that blindness was rare with it. Do you...
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mdkempes@...
mdkempes
Feb 15, 2004 1:08 am
I am not aware of any pain aside from headaches. Why don't you email Dr. Scott in Boston and ask him....even though he is a pediatric specialist, he could ...
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Ginny McCarthy
xiaoming54
Feb 28, 2004 2:30 am
For those who don't know, Children's Hospital in Boston is having its 2nd "Miles for Miracles" fundraiser in June. It is a pledge walk and a celebration of...
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marlew47
Feb 28, 2004 9:52 am
My 15 month old daughter just had two surgeries with Dr. Scott at CHB. We were there from Florida for 20 days. If anyone would like to read about our...
