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...
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...
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...
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 ...
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...
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...
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...
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...
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...
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...
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...
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....
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 ...
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 ...
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...
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...
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...
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...
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 ...
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...
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....
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 ...
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...
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...
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 ...
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...
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...
Good evening. My name is Danette and my son, Austin was diagnosed today. We had an MRI/MRA two weeks ago for the Moya Moya dx, and it did not rule it out. So...
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