Author Topic: New member of the club  (Read 1938 times)

brp51d

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New member of the club
« on: May 21, 2009, 08:59:00 am »
Hello all! I had a 3.5cm AN removed just under 5 months ago. I have had most of the post operative sysmptoms discussed on this board. After four and a half months of facial paralysis I have started to get some minor movement which is very reassuring. I wish I had known about this board fromt he beginning. The information and support is priceless. A few days ago I started edxperiencing the "wonky head" many of you have discussed. After several days of anxety I was very relieved to learn that I am not alone in having this unpleasant side effect. When I told my wife about it she din't react-she thinks I have always been a little wonky. Anyway, the best to you all and thanks for sharing your experiences with a fellow sufferer.

sgerrard

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Re: New member of the club
« Reply #1 on: May 21, 2009, 09:08:43 am »
Hi brp51d (that's quite a mouthful to say out loud),

Welcome to the forum! Better late than never, I guess. 3.5 cm is a big one, it is not surprising that you have some post surgery symptoms. Hopefully you will find some companions here on the forum who can share stories about wonky head and all the rest, as well as progress on facial nerve recovery.

Steve
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.

Keri

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Re: New member of the club
« Reply #2 on: May 21, 2009, 09:10:38 am »
Hello and welcome,
I'm so glad your facial issues are showing signs of improvement. I had surgery a little under 4 months ago (my AN wasn't as big) but have had facial issues that are improving a lot too.
The wonky think is always around at some point everyday! It feels different in different situations. Immediately post op I didn't have any problems with it at all, now I do, but it's not that bad... just takes some getting used to.
This is a great group of helpful people - I've had many questions answered here. Now I try to be encouragement to some 'newbies' and 'posties' but I still need encouragement too at times!
We're happy to meet you.

Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

brp51d

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Re: New member of the club
« Reply #3 on: May 21, 2009, 09:17:43 am »
Thank you for the warm welcome. What I have read in the last couple of days has been very comforting and has definitely reduced my stress level. I am pretty good with the pain[headaches], and upsetting symptoms. What I was not prepared for was the emotional rollar coaster.I do feel that the worst is over and I'm trying to be patient about recovery. All in all I think I have been lucky and will only improve with tim. Thanks again

CHD63

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Re: New member of the club
« Reply #4 on: May 21, 2009, 10:05:52 am »
Welcome .....

Sorry you had to join our exclusive group of ANers but sure glad you found this site ..... you will find many anwers and much encouragement here!  When I was first diagnosed I found this site but was scared out of my wits with what I perceived as horror stories.  If I had only stuck around and looked longer I would have discovered (what I did much later) what a wonderful group of people they are and I had simply focused on the negative aspects.

You might check out some of the Cognitive Issues threads or search for "stress" and you will find some things that may help with the emotional roller coaster aspect to this.  Unless they are unusually stoic people, most of us ANers ride this ride.  As you will read this does get better with time and improvement in the physical aspects.  My biggest problem is my impatience ..... I want to be back to "normal" right now!  AN recovery is not a "fast fix."

Hang in there and keep posting.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

moe

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Re: New member of the club
« Reply #5 on: May 21, 2009, 10:34:13 am »
Hi and Welcome!
The emotional roller coaster-I can totally relate.
It comes and goes, even almost 3 years post op for me,
There's  something about the new you, post AN surgery. Most people have symptoms which will to some degree stay with them forever.
For example I function great but at times feel the disequilibrium/lightheadedness  come back, especially with stress/hormones. (good thing you're not a woman :D)
So it's a matter of  changing my expectations on certain things. I enjoy more the simple pleasures, instead of the heavy duty pleasures of life.
But that's OKAY..
Welcome to the AN journey!
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

Jim Scott

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Re: New member of the club
« Reply #6 on: May 21, 2009, 12:51:20 pm »
Thank you for the warm welcome. What I have read in the last couple of days has been very comforting and has definitely reduced my stress level. I am pretty good with the pain[headaches], and upsetting symptoms. What I was not prepared for was the emotional rollar coaster.I do feel that the worst is over and I'm trying to be patient about recovery. All in all I think I have been lucky and will only improve with time. Thanks again.

Hi!

A slightly belated welcome and a hope that these forums will continue to be a source of help and information for you.  :)

Jim
« Last Edit: May 21, 2009, 04:00:06 pm by Jim Scott »
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.

brp51d

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Re: New member of the club
« Reply #7 on: May 21, 2009, 01:54:48 pm »
Thank you all-finding this site has been a godsend. My spirits are up and my anxiety level is way down.

leapyrtwins

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Re: New member of the club
« Reply #8 on: May 22, 2009, 06:11:16 pm »
Hi and welcome  ;D

I, too, wish I had known about the forum - and the ANA - long before I did.  I discovered an ANA brochure in my doctor's waiting room the day I went to his office to have the stitches from my AN surgery removed.

I think it should be a requirement for all doctors who treat ANs to tell their patients about the ANA - and this forum.  So pass it on  ;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