Author Topic: If You Were Me...  (Read 3623 times)

allisjbh

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If You Were Me...
« on: March 20, 2011, 06:54:45 pm »
... what would you do? I'm desperately trying to figure out what the next step should be. The information is just swirling around! It's been about 15mos since the AN surgery - no movement to my paralyzed right side of the face. I've had an eyelid weight and brow lift. Is it too late for me to try the 7-12? The cheek implant sounds like a good procedure - as does the nerve to nerve graft. At what point do you try the T-3? If I have a static sling done now for my lower face, will it interfere with other procedures later? Would this just be a waste of time? I wish there was a troubleshooting list of things to do for paralysis treatment like there is for computer troubles. This is driving me nuts.
Allison
ALLISON
2.8cm x 3.8cm AN translab 12/31/09 Emory Atl Drs Olson & Mattox;  right facial paralysis: "... (facial) nerve remarkably thin..." EMG 8/10; gold weight, tarrs, & browlift 1/11 Neufeld; facial sling implant & left eye bleph 4/11 Yellin

lori67

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Re: If You Were Me...
« Reply #1 on: March 20, 2011, 08:08:03 pm »
Allison,

I had my 7/12 at 18 months post op, so you still have time if you decide to go that route.  I had no movement prior to the 7/12 and now at about 2 1/2 years after, I  have very good symmetry at rest and do have movement.  It's not perfect, but it's a whole lot better than what it was and I'm still getting new movements, so there's no telling what my final result will be (and when!).

I think the best thing to do would be to talk to your doctor to make sure one thing won't interfere with another and find out what the logical first step would be.  My understanding is that the static sling would be done after any sort of procedure to try to get actual movement back.  I know it wasn't mentioned to me as an option until after my 7/12, in case it didn't work.  Fortunately, it did.

Good luck!  And I know how you feel, this can make you nuts! 

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Suu

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Re: If You Were Me...
« Reply #2 on: March 21, 2011, 12:22:37 am »
Hi Allison
I agree with Lori about talking it out with your doctor.

I'm in the same boat as you right now and wondering the best course of action regarding having the nerve graft or one of the 'other' procedures that I've been researching and reading about here.

My doc has said that the 12/7 nerve graft is what he thinks for me will have the best benefit.  It's scary.

Let us know what you and your doctor decide please so we can follow your progress?

Hugs,
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

moe

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Re: If You Were Me...
« Reply #3 on: March 21, 2011, 08:11:43 am »
Hi Alison,
I know you have a doctor's appt today. Hope you get some answers to your questions/concerns. Please let us know how the confusing barrage of information is coming along-we'll help you through 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

allisjbh

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Re: If You Were Me...
« Reply #4 on: March 21, 2011, 01:29:15 pm »
Thank you so much for your responses to my panic attack! The anxiety of all of this is so intense - I starting taking my prozac again. I did ask today if the sling would interfere with any future dynamic surgeries, and he said it would not. I will probably go with the Gore-Tex sling procedure for now - and wait a little longer to see if the nerve will start to regenerate on its own. For me, having a pretty smile is not quite as important as not having this frowning droop, which makes me look angry. If I can have a pleasant look at rest, it will be okay for now. This will give me more time to research and think things over. I'm having this surgery April 5. I appreciate any prayers! :-)
Allison
ALLISON
2.8cm x 3.8cm AN translab 12/31/09 Emory Atl Drs Olson & Mattox;  right facial paralysis: "... (facial) nerve remarkably thin..." EMG 8/10; gold weight, tarrs, & browlift 1/11 Neufeld; facial sling implant & left eye bleph 4/11 Yellin

Brewers7

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Re: If You Were Me...
« Reply #5 on: March 21, 2011, 02:07:23 pm »
Said a prayer for you today.  I am looking at some options, too.  I got some symmetry at rest at about one year, then some movement at about 18 months.  My neuro doctors want me to wait, but I am now over two years post op and all out of patience.  Keep us posted.  Susan
« Last Edit: March 22, 2011, 09:27:31 am by Brewers7 »
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010

allisjbh

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Re: If You Were Me...
« Reply #6 on: March 21, 2011, 03:20:34 pm »
Thank you Susan. Along with the sling, I will have blepharoplasty to the left eye which should give some symmetry after my brow lift and weight to the right eye. I will keep you posted! I'm semi-relieved just to have made a decision for now. :-)
ALLISON
2.8cm x 3.8cm AN translab 12/31/09 Emory Atl Drs Olson & Mattox;  right facial paralysis: "... (facial) nerve remarkably thin..." EMG 8/10; gold weight, tarrs, & browlift 1/11 Neufeld; facial sling implant & left eye bleph 4/11 Yellin

moe

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Re: If You Were Me...
« Reply #7 on: March 21, 2011, 06:29:10 pm »
Allison,
Glad to hear that you feel comfortable in your decision. It is maddening and anxiety producing, for sure. Keep us posted and I'll keep you in prayer for a successful surgery on 5 April. Surgery, surgery, surgery.....seems to be our life >:(
And SUSAN, totally understand the patience deal. Have you had or talked about the 12/7 transposition to help with movement?
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

Suu

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Re: If You Were Me...
« Reply #8 on: March 21, 2011, 08:30:18 pm »
I'll send prayers and luck you way from Down Under and hope that you're calm and rested when we hear from you next.
Suu xxoo
4cm Left side AN Translab August 18th 2010
Facial nerve not working
Nerve conduction Jan '11 Repeated 23rd May '11
SSD left side
5 ops in 6 weeks to fix CSF leaks
Tarsorrhaphy 9 Mar '11 Extended 26 Aug '13
Sling Thur 16 June '11
12/7 nerve graft 9 Feb '12

allisjbh

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Re: If You Were Me...
« Reply #9 on: March 22, 2011, 07:30:34 am »
Thank you Suu. Moe, I was just thinking that same thing this morning - "Here we go, under the knife again."
ALLISON
2.8cm x 3.8cm AN translab 12/31/09 Emory Atl Drs Olson & Mattox;  right facial paralysis: "... (facial) nerve remarkably thin..." EMG 8/10; gold weight, tarrs, & browlift 1/11 Neufeld; facial sling implant & left eye bleph 4/11 Yellin