Author Topic: Enough is enough !  (Read 4812 times)

LADavid

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Re: Enough is enough !
« Reply #15 on: June 06, 2008, 12:03:57 pm »
Hey John
I can relate.  I'm only six months out and not only am I running out of patience but my career is non-existent and as a result my finances are a disaster.  As several others have mentioned, the surgery was the easy part.  Knowing what I know now, I wish I had put the surgery off until I was in a better position to do it.

Like Anne Marie, I used to have a very active social life -- eating in restaurants, driving places, meeting friends.  Not anymore.  But there is one thing I do find comfort in and that's knowing that there are people on the forum who do understand and are compassionate.  As I mentioned before, we all post pre-op pictures.  We're all smiling in them.  We don't see the post-op half smiles, the open eye, the dizziness and loss of balance, the often disorientation, and the misery and pain.  I've felt alone like no one understands what I'm going through -- until I read the posts on this forum.  And there are those who give me hope that it will get better and that I will eventually go back to a normal life -- whatever that may be.

Hang in there.  It's a shame there isn't a post-op recovery home for all of us to be together for support.  But the next best thing is this forum.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

nancyann

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Re: Enough is enough !
« Reply #16 on: June 06, 2008, 01:00:38 pm »
John - I've heard some people are slower to see movement with the nerve graft then others, then some get back tone but no movement.   I personally would wait the year,  then talk again with the docs & see what they think. The T3 is for those with chronic facial paralysis & no chance of recovery - length of time with paralysis doesn't matter, although some, like me, had to have extra stuff, like a sling procedure too b/c my muscle was quite atrophied.  'Kaybo', who had the nerve graft years ago just had the T3 - she had tone but her smile remained crooked.  There are quite a few of us with the 'Mona Lisa' smiles, & I bet the #'s keep growing. 
Did you know 'Pattibobatti' was the one who told me about the T3 ! ! !

Take care,   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Jim Scott

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Re: Enough is enough !
« Reply #17 on: June 06, 2008, 01:03:12 pm »
John:

I came upon this thread somewhat late and so I'm pleased to see that your dark mood has apparently passed. 

No need to apologize here for feeling exasperated at the glacial pace of recovery and the manifest inconveniences, petty humiliations and overall frustrations a slow AN surgical recovery - with myriad complications - can bring.  Many of us have had a similar experience, as this thread shows.  We get it.  We're also here to let AN patients like you vent a bit when necessary, knowing that we'll understand why you're so frustrated.

I was one of the 'lucky' ones who had (retrosigmoid) surgery followed by FSR and came through relatively unscathed. Oh, I have a few (invisible) reminders of my AN experience but generally, I'm fine as I celebrate my two-year surgery anniversary.  I have my semi-annual MRI coming up at the end of this month and I expect it will bring good news (shrinkage, necrosis). 

Meanwhile, I remain connected to this website because I know that many other AN patients were not quite as fortunate as I've been.  There are many reasons for the variety of surgical (and radiation) outcomes but I attribute most of my positive outcome to prayer.  However, that's a personal matter.  What concerns me is the well-being of my fellow ANers who are suffering with post-op problems.  I can't fix any of them or wish them away but I can offer my moral support, encouragement and a place to vent, dish, kid around or whatever is necessary at the moment.  It may not always be enough and I may not always do it as quickly or as well as I would prefer, but we all work together here as a 'community' and I'm proud to be a part of it and to have you with us, John.  :)

I truly hope for more rapid healing for you and I'll pray for that on your behalf.  Thanks for posting and staying connected here. 

Now, if you haven't already done so, grab your straw and go enjoy that Cuervo-enhanced Margarita,.  ;)

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.

yardtick

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Re: Enough is enough !
« Reply #18 on: June 06, 2008, 02:31:32 pm »
Jim,

No wonder they made you a moderator!!! 

Satman,

Any time you are ready ;D 

Where's Capt Deb and Jimmy Buffet with Margareta Ville to help us  sail along  ::)
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

Jeanlea

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Re: Enough is enough !
« Reply #19 on: June 06, 2008, 05:21:10 pm »
I'll take a pina colada, please.  Even though I have facial paralysis I gave up the straw for my own unique method.  I hold up the corner of my mouth on the paralyzed side.  Now I need two hands to drink, but just one glass.  lol 
Glad you are feeling better, Satman.  Sometimes we need to come here and vent with others who understand.  As the others have said, you do get better over time.  It's just a lot longer time than we would like.  It is nice to think back to the beginning and see how far I've come since then.

David, my pic is post-surgery.  Two years post-surgery.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

leapyrtwins

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Re: Enough is enough !
« Reply #20 on: June 06, 2008, 05:50:42 pm »
satman -

tuned into this thread a little late and am extremely relieved to see that today's cloud is passing.  I must confess reading your earlier comment about a bullet in the head greatly concerned me.  I sincerely hope that is something you never resort to.  Better to just come here and vent.

You have had, and are having, a tough time - but you are tough.  You've proved that time and time again.  Keep in mind that no one can be tough 24 hours a day, 365 days a year; your nickname may be Super 8, but you are human  ;)

Stay strong, and relish every sip of that celebration margarita - hell, have 2 or 3 - you definitely deserve them!

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

Kaybo

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Re: Enough is enough !
« Reply #21 on: June 06, 2008, 08:01:53 pm »
Satman~
I'm glad that you are feeling a bit better.  It is so wonderful to be able to come here and have people that understand what you are going thru.  Trust me...I felt ALL alone - I had NO ONE to talk to that understood for 12 YEARS!!!!!!  It good that you understand how special this is!!

I would DEFINITELY wait to pursue the T3.  I had to wait, as T3 was around until a couple of years ago, but it took a good while for the 12/7 to take effect.  I certainly would pursue it in a year or two if necessary.

Also, I am coming to the DFW area in July -- you want to try to get everyone together that is in that area??

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!

LADavid

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Re: Enough is enough !
« Reply #22 on: June 06, 2008, 09:53:32 pm »
Hey Jean

You are one of those who posted a post-op photo.  Actually there are quite a few.  But then there are those who didn't -- like me -- who no one really sees the snarl or the half-smile that we live with.  Maybe I need to rethink this and post the real me.  I'm having eye surgery next week -- that might be a good shot.

How's the running?  My daughter and I are stumbling through 6 miles tomorrow.

And Kay -- you have my utmost respect.  Since you were 24 -- you had no one who understood.

David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Jeanlea

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Re: Enough is enough !
« Reply #23 on: June 06, 2008, 10:02:40 pm »
David, I saw the picture of you after running.  It looked fine.  Pictures are one thing.  Just glad we don't have moving pictures on here.  lol  I have pictures of me right after eye surgery.  Never looked so good...the string attached to the lower eyelid lift was really special.  :-) 

I'm running with 4 other people in a 50 mile relay on Sunday.  It's a fundraiser for cancer.  A woman battled cancer and almost made it to her 50th wedding anniversary.  Her children hold it in her honor.  She was a nice lady.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

er

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Re: Enough is enough !
« Reply #24 on: June 06, 2008, 10:39:27 pm »
 
Satman,

You, can rant and rave as much as you want we are here to listen to anything you want to say.
We all relate.

God bless.

eve

nancyann

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Re: Enough is enough !
« Reply #25 on: June 07, 2008, 07:44:01 am »
Jean:  your pics just keep getting better & better ! ! - obvious proof that waiting longer than a year is necessary, especially for those whose nerve was really stretched/mashed from the tumor.
I am so happy for you ! (& just a little jealous !).

Always good thoughts,   Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

lori67

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Re: Enough is enough !
« Reply #26 on: June 07, 2008, 09:46:14 am »
Jean, good luck on Sunday!  Hope the weather is perfect and there's a good turn-out.

I think after I'm gone, I'd like someone to hold a Memorial Beach Sitting in my honor.  I think it would be a fitting tribute.

And, by the way, I think we all look stunning - pre and post-op!!

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.