Author Topic: AMD - are you out there?  (Read 3140 times)

Keeping Up

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AMD - are you out there?
« on: December 17, 2008, 08:11:19 pm »
You share my initials so have been thinking about you.

Hope you are healing well.
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

AMD

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Re: AMD - are you out there?
« Reply #1 on: January 13, 2009, 06:08:15 pm »
hi there.  yes, i'm here.  sorry it took so long for me to get on the site again.  still having issues with my right arm not moving much since surgery, but it is making improvements. i was able to start moving it a couple of inches last week, so if it keeps progressing, that would be great. 

my husband printed me out all of the emails and messages you all had left me since the operation.  thanks for all the support and words of encouragement.  hope all of you are doing well too...

-Amy D.
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

Rivergirl

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Re: AMD - are you out there?
« Reply #2 on: January 13, 2009, 06:18:44 pm »
Amy, that is scary what you have been through, hope you continue to improve, sending well wishes for complete healing.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

Kaybo

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Re: AMD - are you out there?
« Reply #3 on: January 13, 2009, 08:11:56 pm »
Amy~
Just take each day as it comes.  Even though I did not have all the complications you had, I had to relearn to use my right (dominate) side.  I had to relearn how to write, eat, everything and I also had to relearn my speech.  It WILL come, just be patient and don't expect too much too soon.  I know that you probably HATE hearing that all of the time, but it is true.  I am 13 years out now and most people don't know that I had those problems to just look at me.  Now the face is another thing - it is a dead give away!  LOL!!  Please check out my blog & you can see what a full life I lead now (address below).  Also, I would love to chat with you if you would like - just PM me your info!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Keeping Up

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Re: AMD - are you out there?
« Reply #4 on: January 13, 2009, 08:47:36 pm »
Glad you are back - even if recovery is slower than you had expected.

I have been thinking of you - and hoping you are able to spend some great time with your little one.

Ann
dx Dec/08 - 5mm x 8mm AN
'watch and wait'

cindyj

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Re: AMD - are you out there?
« Reply #5 on: January 13, 2009, 09:06:16 pm »
Hi Amy!  Glad to hear from you.  Brad was just asking about you last week.  So sorry it's been such a tough road for you, but glad to hear that you are making progress now. 

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

sgerrard

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Re: AMD - are you out there?
« Reply #6 on: January 13, 2009, 10:04:06 pm »
Welcome back, Amy. I hope the arm keeps improving every day and week. Don't give up, the body can do amazing things. Best wishes for continued improvements.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jim Scott

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Re: AMD - are you out there?
« Reply #7 on: January 16, 2009, 04:32:47 pm »
Amy:

Good to see you're back and improving, slowly but surely.  Alas, I don't share your initials but I do include you in my prayers for continued improvement in your physical condition.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.