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question for savannah (Read 3983 times)

sandy

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three of my children have
mm

Posts: 32
asheboro, USA, usa, 469, 186, NC, North_Carolina
Gender: female

question for savannah
Apr 26^th, 2004 at 10:40pm

i am a moyher of 4 my oldest daughter has not had surgery i was told she was to far gone into the disease that surgery was not an option but jacob had alot of strokes when his surgery was done he even had another massive stroke during surgeryand it done a lot of damage he was just as bad as savannah but now5 yrs later you cant tell he is mobile he just cant talk and he has a lot of volient out burst but what i am asking do you think i should get another opinion about savannah?

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STrantas

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MoyaMoya Survivor Since
2003

Posts: 1154
Philadelphia, USA, usa, 490, 122, PA, Pennsylvania
Gender: female

Re: question for savannah
Reply #1 - Apr 27^th, 2004 at 8:41am

Absolutely you should get another opinion! I don't think there is a scenario that is "too far gone." If she's had a stroke recently they may suggest to wait a little bit for the brain to "calm down" but I don't think you should accept that first doctor's opinion. There is a list of great doctors on this board - look any of them up! Good luck and please keep us informed!

-Shari

A smile is contagious...start an epidemic!
Dr. Scott did my surgeries - 12/29/03 and 1/5/04

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mg12061

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Albany, USA, usa, 492, 84, NY, New_York
Gender: female

Re: question for savannah
Reply #2 - Apr 27^th, 2004 at 10:33am

I agree please get another opinion.My daughter was extremely unstable at the time of her surgeries but has been stroke free for 2 yrs. now.She also had a stroke the day before her first surgery and strokes on both sides 4 days after ehr surgery.She was paralized on her left and greatly weakened on her right. She is walking talking and reading now.Please keep us posted.The Dr's listed here on this site will answer any of your questions and lead you in the right direction.You can e-mail them yourself.YOur family is in our prayers.
Mary Grace

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Mar

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Re: question for savannah
Reply #3 - Apr 27^th, 2004 at 10:43am

Sandy,

I agree with Shari and Mary Grace. You must get a second opinion from an expert! One with adept knowledge of this rare and devastating disease. We've heard time and time again, inexperienced doctors saying to wait... they may be good doctors, but just not as learned enough about this rare disease as the experts. Simply sending Savannah's films to one of the experts on this website may save her life or prevent an occurrence of great damage. Every case is different, but what could it hurt to be sure. That's my opinion, from one who's been there. The surgery saved her life.
You all will be in my thoughts and prayers.

God bless,
Mar

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PatM

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Woodcliff Lake, USA, usa, 498, 109, NJ, New_Jersey
Gender: female

Re: question for savannah
Reply #4 - Apr 27^th, 2004 at 12:10pm

Sandy, By God, you need to get another opinion, and fast. My neurosurgeon, Dr. E. Sander Connolly, Jr. works with a brilliant pediatric neurosurgeon named Neil A. Feldstein, M.D. He is on the Columbia University link on out website. His e-mail address is naf6@columbia.edu. He has done at least 70 surgeries on moyamoya children. If you want, I am seeing Dr. Connolly to have my staples removed from my right side EDAS surgeries on Thurdsday and I can ask him about your child.....but, really, I would not wait....e-mail Dr. Feldstein right away and tell him about your children. Tell him that you were recommended to him by Pat Martin. a patient of Dr. Connolly's. And, if you need a place to stay when you are here, I am only 25 miles away from the hospital and can get you there (even if I'm not allowed to drive yet, I can have my brother or one of my girlfriends drive you in). WE have plenty of room and I have 3 daughters of my own, ages 13, 10 and 4....so PLEASE don't let finances or accomodations be a concern...you can stay as long as you need to with me......WE have plenty of bedrooms and bathrooms......Sandy, I am deadly serious......DO NOT WAIT!!!!! Let me know how you make out.....once again. I look forward to seeing you in August. Let me know how else I can help. You and your family are in all our thoughts and prayers.....God Bless..PatM Kiss

"A life is not important except in the impact it has on other lives."...Jackie Robinson&&Worry looks around....Faith looks up......

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Nancy_N.

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My daughter Mandy Has
Moyamoya

Posts: 664
Jasper, USA, usa, 436, 230, GA, Georgia
Gender: female

Re: question for savannah
Reply #5 - Apr 27^th, 2004 at 12:27pm

Sandy,
They are all absolutely correct you need another opinion asap. I agree with Shari I don't think it can ever be to bad. My daughter had 4 strokes 3 severe and still was able to get surgery we sent her films to Dr. Steinberg in CA. and had a call back the next day. I wouldn't even wait until Thursday not to scare you but as you know anything can happen at any moment. Please take everyones advice we know of what we speak. Good luck our thoughts and prayers are with your Family. Please keep us posted!
Nancy Smiley

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