Author Topic: This Week (4/26) in the Pandemonic AN World  (Read 5999 times)

Kaybo

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #15 on: April 28, 2009, 06:36:55 pm »
I don't mind the TOD - I actually kind of LIKE it - no screaming, yelling or "stop that!!" ;)

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!

leapyrtwins

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #16 on: April 28, 2009, 09:05:17 pm »
Kay -

glad I'm not the only one.  It was a little creepy at first, since I haven't been in one for a year now, but as long as I close my eyes I'm okay.

I actually found myself listening to the banging noises and I found they had a distinct pattern to them - almost like music in a loud kind of way.  When they pulled me out to inject the gadolinium in my arm I was smiling and looking very amused.  The MRI tech must have thought I was a complete nut  :D

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

suboo73

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #17 on: April 29, 2009, 03:58:09 am »
When they pulled me out to inject the gadolinium in my arm I was smiling and looking very amused.  The MRI tech must have thought I was a complete nut  :D Jan

Keep 'em guessing, Jan!
Love it!

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

saralynn143

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #18 on: April 29, 2009, 05:53:50 pm »
So, I am back from the eye doctor. As usual, he was running late. But he said that my eye looks good, with minimal dryness. He asked if I had any movement back in August when he put in the weight, and I said no. He said he recalled a little movement when I was there four months ago and he sees more now.

I said that yes, there was more movement, but I still had a way to go. And he said yeah, a long way. That was a little deflating, but he said my mouth looks nice and even now and then set me loose for six months rather than four, and said he hoped for a lot more movement next time.

Also, my eye shuts to within 1 mm and then drifts all the way shut. I blink about halfway. He wants me to concentrate on blinking slowly to let the eye shut completely more often. I'll try, but boy that is hard to remember.

Found a car I fancy on the way home. I hope to be able to take my husband to see it Saturday, unless it sells first.

Sara

MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

stoneaxe

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #19 on: April 29, 2009, 09:45:18 pm »
Kay -

glad I'm not the only one.  It was a little creepy at first, since I haven't been in one for a year now, but as long as I close my eyes I'm okay.

I actually found myself listening to the banging noises and I found they had a distinct pattern to them - almost like music in a loud kind of way.  When they pulled me out to inject the gadolinium in my arm I was smiling and looking very amused.  The MRI tech must have thought I was a complete nut  :D

Jan

I actually find them relaxing and have even fallen asleep..... ::)
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

leapyrtwins

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #20 on: April 29, 2009, 09:54:24 pm »
Thanks for the validation, Stone.  Nice to know I'm not a complete nut  ;)
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

suboo73

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #21 on: April 30, 2009, 03:52:18 am »
Hi!  I have only seen Laura's surgery updates?
Anybody know if we have the other surgery updates from this week?

All my best to EVERYONE having treatments/TOGS, etc.!
HAPPY BIRTHDAY to Patrick, HAPPY BIRTHDAY to Patrick!  ;D

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

leapyrtwins

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #22 on: April 30, 2009, 06:43:01 am »
Sue -

link to Laura's updates http://anausa.org/forum/index.php?topic=9431.0

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

moe

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #23 on: April 30, 2009, 08:46:30 am »

Also, my eye shuts to within 1 mm and then drifts all the way shut. I blink about halfway. He wants me to concentrate on blinking slowly to let the eye shut completely more often. I'll try, but boy that is hard to remember.

Found a car I fancy on the way home. I hope to be able to take my husband to see it Saturday, unless it sells first.

Thanks for the reminder of blinking more slowly to let the eye shut completely, Sara. I'm so focused on face exercises, that I forget "eye" exercises!

Maybe we can add to this week that Sara bought a new car!!!!

Great time to buy a car and great deals. Go for it if you can. You deserve it ;)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

saralynn143

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #24 on: April 30, 2009, 03:24:48 pm »
Maybe we can add to this week that Sara bought a new car!!!!

Great time to buy a car and great deals. Go for it if you can. You deserve it ;)
Maureen

Think positive thoughts! I'm ready to check something -- anything -- off my massive to-do list and release some endorphins. I will report as soon as possible what happens. Arranged my finances today, and the sales guy said we could write a personal check. I was surprised to hear that, though they probably have a mechanism to find out if it is good.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

moe

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #25 on: May 01, 2009, 09:22:29 am »
. Arranged my finances today, and the sales guy said we could write a personal check. I was surprised to hear that, though they probably have a mechanism to find out if it is good.


Yea!!!!! We are on our second subaru forester. Very nice, reliable car.
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

saralynn143

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #26 on: May 02, 2009, 07:48:24 pm »
We are home with our (almost) new Forester. 2008 LL Bean edition, green over silver with tan leather upholsetry. We got a good price on it due to high mileage.

Get this -- the former owners were a retired Baptist minister and his wife, who drove it all over the country on mission trips. They traded it in on a new Forester. We found a picture of them in the glove box. They are very cute.

My great great grandfather was a circuit-riding primitive Baptist minister, so maybe we were fated to get this car.

Now if I can just arrange to drive it to Chicago in August . . .

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

moe

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #27 on: May 02, 2009, 07:52:50 pm »
Sara.
I think that car was meant to be! Congratulations. Sounds cozy :)
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

saralynn143

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #28 on: May 05, 2009, 05:35:43 pm »
When I first saw the "pandemonic" week, I thought it said "palindromic" week, which is appropriate since ANA is a palindrome.

It reminded me of a story my daughter wrote for her English class about a group of palindromic mermaids. Their names were Hannah and Anna and Ava and Eve. Unfortunately the only boy name we could think of was Otto.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

leapyrtwins

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Re: This Week (4/26) in the Pandemonic AN World
« Reply #29 on: May 09, 2009, 11:20:03 am »
My MRI only required my head going in.  I didn't have to do the full body thing.

Sounds a lot nicer than the "whole body experience". 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways