Author Topic: Looking different???  (Read 5091 times)

tenai98

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Looking different???
« on: May 29, 2009, 09:24:34 am »
Even thou I have no facial paralysis, people are saying I look different. So I finally ask how do I look different. Every one said I looked spaced out or dozy type thing. I am not taking any meds. I think it might be the wonky head. My brain is fine in the thinking department but my head at times feels heavy or clogged up. I'm wonderin if my balance issuies will improve. I'm only 7 weeks post op, but if this is as good as it gets, its livable and doable
JO ;D
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

Migoi

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Re: Looking different???
« Reply #1 on: May 30, 2009, 07:25:32 am »
A theory which may or may not apply to you... After you've had a brain tumor you realize that a whole lot of the stuff people tend to stress over and get upset about just doesn't matter. Maybe they are interpreting your lack of concern about the smal stuff as being spaced out. Maybe it's a philosophical change rather than a physical change... just a theory.

It seems like to me that at 7 weeks post op you still have a lot of room/time for improvements. I didn't start to get movement back in my face until around then. It is good though that you have reached a point to knowing you can live with your current level of recovery. This isn't to suggest you stop any recommended actions meant to improve the situation but I do believe the shift in attitude that accompanies this acceptance can have a major, positive impact on future improvements.

Just some armchair theorizing for a Saturday morning... now on to a real problem..how to retake control of my lawn after a 12 day absence.

..take care... tim b
Arkansas Support Group Leader
The wild places are where we began. When they are gone, so are we. - D.B.
AN's only affect the smartest, most interesting people in a population.
On a hill in Onda, AR
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CHD63

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Re: Looking different???
« Reply #2 on: May 30, 2009, 09:00:45 am »
Hi JO .....

Just having major surgery of any kind changes the way we look, walk, etc. for awhile.  Perhaps your SSD and balance issues are causing you to hold your head differently.  I know the balance issues for me  have changed the way I hold my head (much more focused straight ahead when walking) and the way I walk (wider gait for stability now).

Your balance will improve for months after surgery and I suspect you will regain your pre-surgery appearance gradually.

Take care.  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

cin605

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Re: Looking different???
« Reply #3 on: May 30, 2009, 09:23:35 am »
I know i am not the same person i was before surgery.I still have the same pesonality i guess...I see people alot that say i didn't even reconize you....granted i did get my hair cut & don't wear my ponytail as i usually always did becouse of my cleaning bussines.
I have no facial paralisis.I also waer contacts now & sometimes i swear they make my vision worst.I never had my eyes checked before
AN was removed but they say i have a stigmitism in both eyes & its no wonder i couldn see good.I do hold myself totalyy different as i am having some muscle spasing.Also my i keep my toes spred out alot more i would imagine to keep my balance.My attention span is also really at a minimum so when people are bableing about B/S i tend to maybe cut them off & get to the point.I also noticed..well
my sister did....that if i am out at a store ect. if some one is just standing around  i will totally avoid them even if there is plenty of room for me to get by & i do this very fast...why i don;t know but i am in some big, huge rush w/ every task.
2cm removed retrosig 6/26/08
DartmouthHitchcock medical center lebanon,N.H.
43yrs old

anissa

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Re: Looking different???
« Reply #4 on: May 30, 2009, 10:23:36 am »
I didn't have any facial weakness either but I feel like I look different, I think its because I feel different inside.  Like Migoi suggested, I am much more nonchalant about things, not because I don't care but because my perspective has changed.  My surgery was a week before yours and I'm like you, if this is as good as it gets, I'm fine with that.  I'm proud of my changes, my physical ones (the crooked gait, I'm a little slower, and what little facial changes that only I notice) and my psychological ones, I've been through a lot and thats ok.   IMO people shouldn't be pointing out changes, we had brain surgery, I think that allows for a little change, ha!
Anissa
2/11/09 Diagnosed AN 2.1cm
2/26/09 Consult with Dr. Clough Shelton, U of Utah
4/1/09 Translab with Shelton & Couldwell
--little teensy bit of tumor or cells on facial nerve, stuck! No facial weakness, Rt side SSD
4/8/10 1-yr MRI, "Looks great!"

Jim Scott

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Re: Looking different???
« Reply #5 on: May 30, 2009, 02:57:59 pm »
Jo ~

I'll throw in yet another hypothesis, worth about what you pay for it. 

If people are aware that you've undergone brain surgery and you're not exactly 100% the same as you were before the surgery, they were likely anticipating changes in you and perhaps amplifying any small differences in your appearance or demeanor.   Imbalance can be very disconcerting to both the patient and onlookers.  Fortunately, it should improve.  You're less than two months post-op and, based on others experience, it will probably be a year or more before your balance is improved enough to no longer be something noticeable to others.  The 'wonky head' will also improve.  Although you're content with your current level of recovery, it will undoubtedly get even better.  :)

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.

moe

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Re: Looking different???
« Reply #6 on: June 01, 2009, 09:37:07 am »
Jo,
You are doing great for 7 weeks post brain surgery, and yes people should notice that you are "not the same."
Whatever it is- the hair, the new outlook on life, taking things slower, thinking through things slower, etc.etc......

I don't sweat the small stuff (really never did before surgery either, but it is more pronounced now).
People may perceive me as not concerned or worried, or nonchalant to the nth degree. But this is how I cope with daily symptoms. 
Our perception of "normal" is now different ;)

I still tell people about my brain surgery 3 years, because my post op symptoms do and always will affect my life. Oh joy >:(
Everyone's "journey" is different. Enjoy each day OKAY? :)
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