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Author Topic: what would you want back ?  (Read 6680 times)

Denisex2boys

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Re: what would you want back ?
« Reply #15 on: December 05, 2008, 08:38:17 pm »
Hmmmm -- there is a lot - but definately at this point it would be nice to have tears and not have to hold my eye shut ......
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- Oct. 16/08 - 12 hour 'blob-ectomy' at LHSC in London, ON - Dr. Lownie and Parnes
- Some internal facial numbness (cheek, tongue, eye), SSD, headaches (getting better), dry eye, some balance issues..... but othwise AWESOME!

sgerrard

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Re: what would you want back ?
« Reply #16 on: December 05, 2008, 09:54:59 pm »
I like this topic. I will keep score, though it seems like it will be a tie in the end. Counting me for hearing and no tinnitus, I make it

Smiles 5
Hearing 4
Blink or tears 4
Tinnitus 3
pain, movement, numbness 3

Seems like we don't know whether to laugh, cry, or flirt!   ::)

Steve
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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.

Kaybo

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Re: what would you want back ?
« Reply #17 on: December 05, 2008, 10:15:13 pm »
SMILE!!   ;D  SMILE!!   ;D  SMILE!!    ;D

Hands down...I don't have any of that stuff - smile, tears/blinking, or hearing, but I am with David on this one - the smile is more defining of the person.  Not those that know you because they hear your joy in your voice, but for just everyday people you meet on the street.  I always knew I had a huge, toothy smile.  Dr. Byrne pointed out to his resident that I was in a more unique group because when I smile, every nerve (?) fired -- I guess not everyone does that! Oh well, 1/2 is better than nothing!!


K   ;D  
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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!

lacey7

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Re: what would you want back ?
« Reply #18 on: December 05, 2008, 11:10:14 pm »
Definitely hearing.  I do have my smile so it's not that.  I'm 5 months post-op, and only realized a month ago, that when I cry, I have no tears from my AN side.
Guess I don't cry that much!!  It seems kinda weird.....but definitely hearing.
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Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

Kathleen_Mc

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Re: what would you want back ?
« Reply #19 on: December 06, 2008, 01:01:05 am »
When I think of what has made daily life the most difficult it is the loss of hearing so I'd have to say hearing.
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1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Pembo

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Re: what would you want back ?
« Reply #20 on: December 06, 2008, 08:39:02 am »
When I was going for facial rehab, I was asked this question everytime...and my answer was always and still is SENSATION. I'm so tired of feeling like my face is huge. I'd like my smile but to feel normal would be heaven.
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Surgery June 3, 2004, University Hospitals Cleveland, BAHA received in 2005, Facial Therapy at UPMC 2006

jazzfunkanne

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Re: what would you want back ?
« Reply #21 on: December 06, 2008, 08:58:35 am »
My smile and my hearing (hope santa got my letter)
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over 4.5cm AN removed dec 06

wendysig

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Re: what would you want back ?
« Reply #22 on: December 06, 2008, 11:10:37 am »
I would like to add that although my balance has improved quite a bit since surgery, I hope to see continued improvement.  Wonky head is still a problem for me in spite of my best efforts and I still weave when I walk.  I managed to stand on a step ladder to put up outdoor Christmas decorations(just looked straight ahead for the most part and at the lights and garland in my hands -- made the mistake of  looking down opnce and didn't repeat that).   Every now and then I found myself clinging to a window frame or the fence for dear life though because I felt like I might fall.   At almost 4 1/2 months post-op, I feel that I am doing very well, but I would like my new normal to be a little less abnormal.

Wendy
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1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

MAlegant

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Re: what would you want back ?
« Reply #23 on: December 06, 2008, 11:57:58 am »
Well, since I have my smile  and hearing I would have to say that I agree with Pembo; I would love to have the feeling back on the right side of my face, but tops on my list is pain-free days. I would also like to speak easily again; for now it's like I have a mouthful of marbles.  I guess I'm greedy and so I want everything to be the same as it was before surgery, minus the tumor.
Marci
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3cmx4cm trigeminal neuroma, involved all the facial nerves, dx July 8, 2008, tx July 22, 2008, home on July 24, 2008. Amazing care at University Hospitals in Cleveland.

Jan D

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Re: what would you want back ?
« Reply #24 on: December 06, 2008, 09:52:27 pm »
I so miss my smile (sigh...)  I have learned to deal with the SSD and eye issues. 

Jan D
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AN removed July, 1966, size of golf ball, seventh nerve severed, shoulder nerve graft in 1967, corner of eyelid stiched twice, deafness in right ear, right eye does not close nor tear and right side of face has virtually no movement.

elderbirds

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Re: what would you want back ?
« Reply #25 on: December 06, 2008, 09:55:44 pm »
I will have to go with the "eyes".  My smile is coming back slowly, and I do produce tears (when I eat spicy or hot foods), but it still doesn't shut all the wa y on its own.  I miss my contacts!!
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Jill Marie

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Re: what would you want back ?
« Reply #26 on: December 07, 2008, 01:45:02 am »
A week ago I would have said, give me a smile for Christmas as nothing can help that, but now I would say let my eye tear again.  Monday evening after work I went to Halpins pharmacy to pick up my regular supply of eye ointment, 24 tubes @ 3.63 ea.  When I got there the shelf was bare, panic set in, told myself that they got a new shipment in but didn't get it on the shelf yet.  Talked to the lady that orders the ointment for me and she said she can't get any and won't until the end of December.  My whole world closed in on me, Christmas is coming and now I'm going to have to spend my time and money trying to find eye ointment.  Most stores don't carry many brands of ointment and only a couple of tubes of the brands they carry not to mention that they run $8 to $12 a tube.  I spend over $1300 a year on ointment, if I can't get what I currently use it will cost me $2600 a year.  The insurance company won't pay for it.  When I got home my husband and I went on the internet and found a company that sells it for half the price so we ordered it.  Two days later we hadn't received a confirmation or back order on the ointment so I called the company.  They said the ointment was back ordered for at leat 2 weeks.   I called the manufacturer the day before and they said there wasn't any problem with the production of the ointment.  I have since tried several places and they ALL say they can't get it so I have a bone to pick with the manufacturer.  I have placed several orders over the internet for the ointment in hopes that someone comes through for me soon.   :)
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Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

Joef

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Re: what would you want back ?
« Reply #27 on: December 07, 2008, 07:40:46 am »
without hesitation ... in order .....

1.  eye problems! ... its been 3+ years.. and I can go thu the day wo/drops ... but still does not blink or feel right...

2. Smile back! I see tons of improvement over the last year.. but still not right, and still feels like I'm at the dentist :(

3. Tinnitus! ... I've had this this for many years before AN dx .. but I still wish it was gone ...

4. Balance .. I can still work a kayak, so its not a huge deal, but still hard at night.. and could not pass a DWI toe to toe walk test  dead sober....

5. last but not least... hearing ... its funny, when I first found out about the AN .. and realzied my might lose my hearing, that freaking me out... but its the least of the problems... (the BAHA helps)

note: I dont have any headache problems... if I did, that would of topped the list...
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4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

leapyrtwins

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Re: what would you want back ?
« Reply #28 on: December 07, 2008, 11:25:16 am »
I'm with Joef.

Not to brag, but my only really annoying issues are SSD and numbness on the AN side of my head, which still feels like a block of wood some 19 months post op.

I love my BAHA, so SSD isn't really the issue to me that it once was - so I'll pick numbness. 

I just want my head to feel like my head again!

To all of you dealing with larger issues, I hope I don't sound shallow here - and I pray that Santa and/or God is listening to all of us.

Jan
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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

chocolatetruffle

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Re: what would you want back ?
« Reply #29 on: December 07, 2008, 03:48:46 pm »
i would want back my hearing, i am also grateful that i got a second ear so i can still listen.  but it is just not the same....... :'(
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chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan
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