Author Topic: GETTING TICKED OFF !  (Read 3161 times)

satman

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GETTING TICKED OFF !
« on: March 17, 2008, 11:50:42 am »
Hey there everybody,I need words of encouragement,Most of you know my story and with that comes lack of
patience and today it fits all to well.
I have had it with the man in the mirror!
For those of you who dont know me I had a 17 1/2 hr surgery,4 months later I had an 8 hr nerve jump surgery and a 2 hr eye weight surgery
and the tumor was 8 cm ,I am from texas,ha,ha..
I am having a bad day because I am not getting any type of facial animation back and the calendar keeps flipping over,and there just never seems to be any improvement, I am ready to yank every mirror off of the wall,I even started smoking cigs again,stupid I know,I'm just stressed I guess.
To top it off I no longer feel the nerve Zapps in my face,could this mean the nerve jump is not working ?
kicked my little 8cm buddy to the curb-c ya !

Sam Rush

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Re: GETTING TICKED OFF !
« Reply #1 on: March 17, 2008, 11:59:46 am »
Sorry you're having a bad day. Facial return is hard to predict, but putting burning leaves in your mouth is not going to help!!! Ask your Dr. about tranquilizers, which are actually safer than smoking.
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

Joef

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Re: GETTING TICKED OFF !
« Reply #2 on: March 17, 2008, 12:08:28 pm »
do you still have numbness ?

at least for me ... zaps come and go... but the numbness is still there .. but getting better.. 2 1/2 years! ...uggg....
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: GETTING TICKED OFF !
« Reply #3 on: March 17, 2008, 12:47:26 pm »
Satman -

so sorry you're having a bad day.  But, like everyone, you are entitled to it; you, maybe more so than others - you've been through so much.
 
You've had the strength and courage to get through bad days before and you will find the strength and courage again.  This is just another rock in the road of life.

I don't want to preach, but I totally agree with Sam about the smoking - stop this very expensive horrible habit now.

Do something good for yourself today and know that we are all hoping for better days for you.

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

nancyann

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Re: GETTING TICKED OFF !
« Reply #4 on: March 17, 2008, 01:09:39 pm »
Hi there John:  I know how you feel about the face,  I'll never know how much worse you are feeling because you went thru the nerve graft procedure & no signs yet of recovery ? ?    I can imagine your frustration.
Has it been a year already since the nerve graft ?     Have you spoken to a neurologist/neurosurgeon about how much longer it will take ?

You know I had the TTT surgery, right? - my face is still paralyzed but the droop is gone & I get a closed mouth smile when I bite down.   I know of 1 pt. of Dr. Byrne's who also had the nerve graft & the TTT.

It's rough for you, I know.....    Just don't give up,  stay strong buddy, you'll get over this hurdle as well.   

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

ppearl214

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Re: GETTING TICKED OFF !
« Reply #5 on: March 17, 2008, 01:27:49 pm »
satman, nothing I say or do will help... but know I'm sending thoughts and huggles your way. Hang tough!

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

pattibobatti

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Re: GETTING TICKED OFF !
« Reply #6 on: March 17, 2008, 06:09:44 pm »
Hey you, Mr. Satman,

Again, I was just chiecking in and saw that you have posted.  You have had a bad day.  I am sorry that the zaps have stopped.  Maybe you need to call the doctor and tell him that.  I remember that I was so sick of all the zaps because I beleived I would never get any nerves that would work.  Then they did stop and I did see a tiny movement on the right side of my lips......   That was 9 months out.   You do not know what really is going on inside that face of yours.  It could be better than you are thinking....

Take care and don't give up, buddy...  and don't smoke.  I personally love to smoke but it causes such destruction...  Kiss that wife.

Love, Patti
17 mm AN removed 1-16-06
  retrosigmoid
  paralysis, cornea transplant,avascular necrosis

   'Are we having fun yet?'

satman

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Re: GETTING TICKED OFF !
« Reply #7 on: March 18, 2008, 03:26:06 am »
Thanks everbody,I knew I could count on you guys,the 7-12 jump was done in august of 07,so it's only been 7 months,it just feels like eternity.
I am getting of off the smokes,I had quit in march of 07 to try and get healthy then found out I had a tumor,IRONIC,hugh ?
My face is still numb after 11 months,not sure if thats a good sign or not,probably not,but all I can do is wait,right ?
Today shall be a better day,yesterday was just,I will say rough in order to curb my language.
Thanks again,you guys are my heros.
kicked my little 8cm buddy to the curb-c ya !

TLC719

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Re: GETTING TICKED OFF !
« Reply #8 on: March 18, 2008, 08:12:23 am »
Hey Satman,    sorry your are feeling so rotten.The first year or so after my AN I was extremly frustrated & down and out.I miss my  smile so much.I have dreams alot that I've got my smile back,then I wake & have to face this.But its coming back.I tell my therapist I'm on slow dail-up.I still have have some numbness in my face.Life is different we got to deal it even when we feel like crap.Big hug!    Teresa
Atlanta Ga.AN 2006 right paralysis,balance issues,SS deaf,just happy to be here!

Jim Scott

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Re: GETTING TICKED OFF !
« Reply #9 on: March 18, 2008, 09:45:57 am »
John:

I came late to the thread but as usual, the gang was there to offer some words of hope and solace.  I'm glad to see you managed to recover a more positive outlook, despite the glacial pace of your facial mobility returning.  I can't even imagine the frustration you deal with on a daily basis and I share your innate impatience so you certainly have good reason to get annoyed and vent a bit.  As you know, we get it, even if we don't all share the exact same problems. 

I was a bit dismayed to read that you went back to smoking but relieved to read that you're quitting.  I smoked for over 30 years, starting as a dopey teenager who wanted to look 'cool', but I finally quit, cold turkey, 19 years ago and never looked back.  During my many pre-op tests, a CT scan showed that my lungs were perfectly clear, which was a pleasant reminder that I did the right thing before it was too late.  For what it's worth: I had a few days of 'withdrawal' when I quit but nothing I couldn't handle.  The habit is mostly mental and once I made my decision to quit, I was determined not to go backwards, and I didn't.  I didn't gain weight, either.

Again, John, good to see that you're forging ahead and realize that nerve issues can take a long time to resolve but you've done all you can and now it's a waiting game.  You know you're free to vent here whever you have the need.  As I said, we get it.

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.

Crazycat

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Re: GETTING TICKED OFF !
« Reply #10 on: March 18, 2008, 11:26:49 am »
Sorry about what you're going through Satman.

  I was lucky enough not to have any facial issues aside from some trigeminal numbness on my left side which is gradually getting better. No facial paralysis whatsoever. An amazing thing considering the growth was 5cm x 5cm (or 50 mm).  I'm 2.5 years out from surgery now.

You've had more complications than I've had.
 
Nerves are very quirky things and have different healing properties than other cells. The way they behave or heal seems to vary from person to person. And we all know that they do not reproduce.

I remember reading once that whenever it came a person being miraculously healed by either what is known as "faith healing" or some bolt from the blue, nine out of ten times the malady in concern that the person had been suddenly healed from was nerve related. I thought that was interesting because, given the nature of the nervous system, it seemed to make sense.

Perhaps you just need more time. How long has it been since your surgery?

Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

satman

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Re: GETTING TICKED OFF !
« Reply #11 on: March 19, 2008, 03:42:27 am »
Hi Paul my tumor removal surgery was in april of 07 and my nerve jump was in august of 07.
Congrats Jim on quitting cold turkey,that takes tremendous will power!
kicked my little 8cm buddy to the curb-c ya !

4cm in Pacific Northwest

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Re: GETTING TICKED OFF !
« Reply #12 on: March 19, 2008, 11:02:37 am »
Satman Super 8

Big Gianourmous Canadian Mother Bear Hugs being sent you!

From what I am reading those that had “the jump� it takes longer for movement to return. You are not a textbook case- being that the tumor you had was 8 cm. If there was a neuro-muscular retraining therapist in Texas I would come out personally and hug you … but it looks as though the therapist I have found is in Wisconsin. Nothing like USA medical tourism!!! Does this journey ever end…?

You know what they say – "kissing a smoker is like licking an ashtray "  :P

We support and adore you … but will be hesitant if you smell like cigarette smoke and you go back to that cancer and tumor causing gunky body pollution.

Think how far you have come since the day of surgery. Also remember that yours was THE biggest of us all- so you are going to need more recovery time (Big Time). Don’t start comparing yourself- to the rest of us… Hey my tumor was only half the size yours was… and I did not have surgery under emergency circumstances. I am just so glad that you lived and are here with us today

Give it the year to see movement signs… then know that there is this story
http://anausa.org/forum/index.php?topic=5544.0
... When you think the facial palsy is a hopeless situation.
(Go back and read the thread)

Know you are not alone in this …We have “Super Duper Trooper Nancy� and “Satman Super 8�. Give up the smoking- but don’t give up your hope.

Hang in there ole buddy!

We are here for you.

HUGS

4


4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

satman

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Re: GETTING TICKED OFF !
« Reply #13 on: March 19, 2008, 11:22:27 am »
He there Mother Bear,the smoking is now a thing of the past,like Jim said it's a mental habit,and I have put them down,today anyway,hopefully tomorrow also.
One day at a time,thought I would have learned that by now.
kicked my little 8cm buddy to the curb-c ya !