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Date for 4 year old daughter's surgery (Read 1243 times)
jnokes
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Daughter,Paige, has NF1
and Moya Moya

Posts: 43
Smithville, USA, TN, Tennessee
Gender: female
Date for 4 year old daughter's surgery
Jul 27th, 2006 at 11:56am
 
I haven't posted a message in a while about my daughter's MM.The last message I posted was about us finally finding a doctor that agreed Paige needed surgery.Her first doctor said she needed to wait until she showed signs of disease progression even though she had already had a stroke.Finally,her new neurosurgeon has scheduled surgery for her to have a direct bypass on Sept 7 at LeBonheur Children's Hospital in Memphis.I am scared for her but at the same time I feel  really good about this surgeon doing her surgery.He has consulted with another neurosurgeon that will be helping during the surgery and they both feel that the direct bypass is her best option.Please keep us in your prayers.I know that this will be a tough time for Paige and for us as her parents.To me it has been tougher having to wait knowing that anyday she could have a major stroke.Thank you all for being there,it has helped us out so much.

Jennifer
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marasmmparents
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Our daughter Mara has
MoyaMoya

Posts: 6
Hermitage, USA, usa, 438, 125, PA, Pennsylvania
Gender: female
Re: Date for 4 year old daughter's surgery
Reply #1 - Jul 28th, 2006 at 11:51am
 
Jennifer,
           My daughter has unilateral Moyamoya and had surgery with Dr. Scott in Boston just after she turned three. We were very blessed in the fact that she had not had any strokes but she was expieriencing numbness in her leg and face. I understand what you mean about waiting because before we were certain what she had and could schedule surgery I was very scared that she would have a major stroke. It was the hardest thing I ever had to through as a parent but please take comfort in knowing that it is the best thing for her.It is amazing that sometimes children are much stronger than there parents are.  You will be in my prayers and I hope everything goes well for you.
                                                                     Mandy
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