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Moyamoya.com Forum › Moyamoya Related Topics › Moyamoya Related Information and Support › surgery consult (update)

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surgery consult (update) (Read 4124 times)

mg12061

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surgery consult (update)
Jul 5^th, 2010 at 7:15am

i've been here a long time..My daughter's 8 yrs post strokes and surgery. The one thing that still stands in the way of her independance is the paralysis of her left hand. So next Monday we're going to Boston to consult with a pediatric orthopedic hand surgeon. There is a surgery that they are now doing to help stroke patients regain some use of an effected limb, a nerve transfer or transplant. I don't know if this is even an option for Kathleen. Or even if it is an option can we put her through a surgery that is not "life-saving" just "life altering". I'm praying all will be clearer after the consult. It reallly would change her life if she could gain even some use of her left hand she would be so much more independant. Has anyone here who has suffered a stroke had any esperience with this or consulted with any Dr.s on this? I do know someone who had this done on a nerve in their face that had been damaged.
Mary Grace

« Last Edit: Jul 19^th, 2010 at 9:16am by mg12061 »

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yunnanababy Experienced Poster Offline My daughter had her surgeries in October 2009 Posts: 137 Indianapolis, IN USA Gender:	Re: surgery consult Reply #1 - Jul 9^th, 2010 at 11:08am Hi Mary Grace, I don't have any experience to share but just wanted to say that I will pray that the appointment on Monday will have a favorable outcome for your daughter. Best regards, Jennifer
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Mayhem MM.com Sponsor Offline diagnosed 1996 Posts: 92 Rochester, USA, NY, New_York Gender:	Re: surgery consult Reply #2 - Jul 9^th, 2010 at 3:27pm My personal experience post-strokes was eventually regaining most of the use of affected limbs and relative normalcy of facial nerves. The only lingering effect is the loss of the ability to juggle well.
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Mimi New Poster Offline I Love MM.com! Posts: 30 Gender:	Re: surgery consult Reply #3 - Jul 17^th, 2010 at 12:15am Mayhem--how long did it take to regain use of your affected parts? Did you have therapy? Thanks.
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pamR

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mom of 15 yr old twins,
one with MM

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Re: surgery consult
Reply #4 - Jul 17^th, 2010 at 3:00pm

Hi, I am going to be in Boston on Monday for my daughter Courtney's 1 year angiogram. We will be there all day most likely. Love to meet if it is possible. We are in Plymouth now trying to have some fun before we go. Let me know if you might have a chance to meet. If anyone can help your daughter, I would say the docs there will!
Pam Rankin

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Mayhem MM.com Sponsor Offline diagnosed 1996 Posts: 92 Rochester, USA, NY, New_York Gender:	Re: surgery consult Reply #5 - Jul 17^th, 2010 at 3:49pm Mimi wrote on Jul 17^th, 2010 at 12:15am: Mayhem--how long did it take to regain use of your affected parts? Did you have therapy? Thanks. A few months with no physical therapy. I also still have issues writing sometimes.
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Mimi

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Re: surgery consult
Reply #6 - Jul 17^th, 2010 at 5:00pm

Mayhem wrote on Jul 17^th, 2010 at 3:49pm:

Mimi wrote on Jul 17^th, 2010 at 12:15am:

Mayhem--how long did it take to regain use of your affected parts? Did you have therapy? Thanks.

A few months with no physical therapy. I also still have issues writing sometimes.

That's awesome (except for writing issues, but progress is good in any form right).

They sensation in my left hand started coming back after the surgery, then it stopped. Now it has gotten progressively worse and my foot, leg and whole arm are weak as well. I've had a nerve study done on my hand before the surgery and they found nothing wrong...before the surgery I was told that the weakness was not extensive enough to warrant physical therapy, but I think it may be now...

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mg12061

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Re: surgery consult (update)
Reply #7 - Jul 19^th, 2010 at 9:23am

Our appointment was last Monday July 12. It went quite well. I really loved Dr. Waters. He does not want to consider surgery until Kathleen has finished growing. We will go back in a year and he'll also order a Hemi-video. This will help with the decision as to wether surgery will help Kathleen. The best thing is he wrote something for us to get extra OT to address her hand specifically. I'm right now searching for a pediatric OT who can do this over the summer. This will also help when we start school because they really don't work on her hand enough. He also mentioned that we may want to consider botox on her hand when we do her ankle botox. I'm glad we at least got the process going and have someone that I trust will not consider surgery unless it will help her enough. Thanks for all your good thoughts!
Mary Grace

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yunnanababy Experienced Poster Offline My daughter had her surgeries in October 2009 Posts: 137 Indianapolis, IN USA Gender:	Re: surgery consult (update) Reply #8 - Jul 21^st, 2010 at 4:37pm That's wonderful Mary Grace. I'm so glad it was an encouraging appointment - it sounds like probably the best possible outcome for the time being! Best, Jenn
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