Author Topic: "Social anxiety"  (Read 7505 times)

jilljpower

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"Social anxiety"
« on: May 04, 2010, 10:47:45 am »
For one, I am so happy to have found this discussion forum.  It is so comforting to have this site and all of you.  I am 11 months post operation for a 4cm AN.  Although finding out about the brain tumor was very scary, I had no idea how hard this road was going to be.  Being that I have total facial paralysis on my right side, I feel and look so much different from what I was and most other people.  Being unable to smile or talk in public without a passerby looking at me strangely always is very common and it hurts my spirit.  It's so unfair to have your smile taken from you.... to spread joy around.  But, it is what it is, and I am now looking into different facial graft options.

Around Christmas last year, I was feeling really bad and sad because I had to see my in-laws for the first time since my surgery.  I know they love me, but I didn't want to be forced to take a picture and it all made me nervous.  I contacted my medical practitioner and let her know that I was depressed and would like to try a medication for depression....   I mean, what else could it be?  So she gave me prozac 10ml, which helped I guess, but I still was having my issues in public.  Finally, I went to a psychiatrist who talked with me and really helped me out.  He said "I don't see signs of you being depressed, it is just that you aren't able to fit in with general public like you used to.  With all of the weird looks you get, it is very common to develop social anxiety, which is completely normal with what you are dealing with."  Anyway, I got off the prozac and didn't notice a difference.  What has helped me though, has been that I figured out why I am so uncomfortable in public.  I can process the looks differently knowing that they just don't understand.  I am also much easier on myself, and others are too, when I state why I am uncomfortable going here or there.  It is a really hard thing to deal with being paralyzed on half of your face.  So when I need a break, or am uncomfortable, I leave the situation and go somewhere comfortable for a little while.  Loved ones should understand if you explain it to them.

The reason I am stating the "social anxiety" subject, is that I would like to help others that are going through, or have gone through similar issues, to cope a little easier.  Oh, and I was able to find a "brain tumor survivor" hat on-line.  It's really cute and it really helps me in public.  When people give me a look and then look at my hat, they seem to understand and then go about there business.  It gives a little power back to me, which is a help.  So, I hope that I have comforted someone today and/or helped them to understand it all a little bit better..  I'd love to hear from you if you'd like to share your feelings.  Jill
4cm AN, debulked 6/22/09 Redwood City, CA Kaiser.  1 gram platinum gold weight in eyelid.  Nerve intact, but full facial paralysis.  Cross Facial Nerve Graft- 2step process 11/2011 and 7/2012.  Try blogging, it has been great therapy for me.  www.jilljoyousjourney.blogspot.c

moe

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Re: "Social anxiety"
« Reply #1 on: May 04, 2010, 11:09:00 am »
Hi again jilljpower!
I just welcomed you to the other post. We both must be online :D
I can truly empathize with you about the unfairness of having the smile "taken" from you and how people look at you in public. My smile was a big part of who I am. I was so self conscious and depressed.

It really bothered me for the first couple of years post op as I was "waiting" for nerve regeneration from the original AN surgery and then the 7/12. People giving me that sympathetic "poor you" nod.
People realizing that I had not had a stroke, and I did not "need help" at the grocery store especially. "Are you SURE you don't need help?" I would have loved to say "Why do I LOOK like I need help?" but never did. :D
I have also tried acupuncture while "waiting" for nerve regeneration, which actually helped with muscle tone.

(Also I'm a home health nurse, so it hurts my "credibility" as an RN-- with the facial paralysis)

The anxiety I experience is I think more from the severe tinnitus on the deaf side, and how it affects all social situations. I hope yours gets better  for you :)
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

CHD63

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Re: "Social anxiety"
« Reply #2 on: May 04, 2010, 01:01:14 pm »
Hi Jill and welcome to this forum of loving, caring, supportive friends with much information to share.

I did not have to deal with the facial paralysis but I just wanted to say you have a wonderful attitude.  I'm so glad you have found a way to keep moving forward.  It would be very easy to withdraw and I commend you for learning some very valuable coping skills.  I'm sure Kay (Kaybo) will soon be posting here with her story, as well as Jean (Jeanlea) who both have walked in your shoes and have wonderful attitudes.  (I know there are many others ..... those were just the first two to come to mind!)

Never give up on the paralysis.  There are many stories on here of additional facial movement months, even years, after surgery.  Plus, as you already know, they are making giant strides with surgical interventions.

Best thoughts.

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

Jim Scott

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Re: "Social anxiety"
« Reply #3 on: May 04, 2010, 01:36:22 pm »
Hello Jill - and welcome.  We're as pleased that you found us as you were to discover the ANA website discussion forums.  :)

Facial paralysis is definitely a daunting issue for many AN post-op patients and you're very astute to begin a thread on the subject, which will eventually have many responses, I'm sure.

I concur with Clarice that your attitude is healthy and realistic.  I'll also echo her comments regarding the very real possibilities of facial reanimation through a number of sources, including surgery. 

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.

Kaybo

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Re: "Social anxiety"
« Reply #4 on: May 04, 2010, 02:06:35 pm »
Hi Jill and Welcome!  Glad that you found us!  I have had complete facial paralysis since 1995 (when i was 25).  I had the 12/7 Graft and then in 2008, I had the T3 - which helped a LOT!  Know that there are options out there and they are getting better and better all the time!  My friend used to always tell me not to match so well (in my clothing) because "you always wanted to make people wonder what you were thinking when you got ready" (I guess to call attention to yourself) - I never really did that, but think of it often...I guess I now have the ULTIMATE "wonder what happened to her?"   ::)  Attitude is 100% and you are definitely on the right road!  Would love to chat with you - PM me if you would like for me to call you!

K   ;D
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!

arkansasfarmgirl

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Re: "Social anxiety"
« Reply #5 on: May 09, 2010, 04:07:03 pm »
I thought I had gotten over my social anxiety.  I have gotten so much movement back and most people don't seem to realize that there is anything wrong with me.  I have been going out in public without a second thought and dealing with people like my old, confident self.  And then came the letters about school reunions.  One for my college department and one for a multi-year high school reunion.  There is not a cell in my body that wants to go to either one of these functions and the sole reason is because I realize that while my face is working pretty well, I am not pretty anymore.  And I used to be.  And shallow as it is, this bothers me more than I want to admit.  I would like to move past it, but I don't know how.  There are so many who are much worse off than I am--I know how fortunate I am--but for some reason, the thought of facing these particular people in my current state fills me with terror.

There, I have said it out loud.  Sort of.   :P

Vonda

sgerrard

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Re: "Social anxiety"
« Reply #6 on: May 09, 2010, 10:47:57 pm »
Vonda,

If the only kind of social function you don't want to go to is a school reunion, you are doing fine. I have been to one, and found it awkward and frankly boring. It was much better to meet up with two or three good friends from those days. The big reunion thing is overrated. It is inherently superficial, because you have only a few minutes to talk to each person, so it does tend to emphasize the first (and only) impression. I think that's why it raises your anxiety about your appearance.

Unless you feel like it, just don't go, and don't feel the least bit guilty about it. Or go to meet up with a couple of people you really like, and ditch the big event.

I think you said it out loud enough.  ;)

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.

leapyrtwins

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Re: "Social anxiety"
« Reply #7 on: May 10, 2010, 06:35:13 am »
I'm with Steve.  In my opinion, school reunions in general are grossly over-rated.

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

Cheryl R

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Re: "Social anxiety"
« Reply #8 on: May 10, 2010, 06:51:20 am »
I think school reunions depend on how big a school you went to also,    I have went to most of mine but came from a smaller school.    We had 60 in my class.     I do not live in the area now but have went and was quite surprised how people have been so much friendlier than they were back then.     I am from near the area where I go back to my surgeon and have had some even be of concern over my AN experience as  a couple work at where I have surgery and one worked with a relative of mine elsewhere and spread the word.         As we have got older, people seem less concerned over looks as opposed to ones personality.   Plus one finds out that some of the best looking a long time ago have really changed.      There has been a few of the guys esp who one ahs to really think who they are due to to how age has hit them.   That football player wouldn't be doing that now.   
  So has to be up to you.                This summer will be my 40th yr one and hard to believe that it has been that long.  My hard part will be the hearing problem!                     Good luck with your decision.
                                                      Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

nancyann

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Re: "Social anxiety"
« Reply #9 on: May 10, 2010, 10:52:23 am »
Jill:  you are such a sweetheart.  Sounds like you're doing better than I was at 11 months - you definitely have more insight !!  I had the social phobia/anxiety big time post op too.  I had to just push foward as I went back to work 2 months post op.  Since having the T3 surgery, I've gotten back to my old self. 
I wish you all the best on your journey as you find the next step that's right for you.
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
right facial paralysis
good to go.

jilljpower

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Re: "Social anxiety"
« Reply #10 on: May 11, 2010, 06:08:54 pm »
Nancyann- I was able to view your pictures, so thank you so much..  You look awesome and I am so sure your social self is back... I am so happy that there are options for facial paralysis!  Thank you so much for your kind words and inspiration.
Jill
4cm AN, debulked 6/22/09 Redwood City, CA Kaiser.  1 gram platinum gold weight in eyelid.  Nerve intact, but full facial paralysis.  Cross Facial Nerve Graft- 2step process 11/2011 and 7/2012.  Try blogging, it has been great therapy for me.  www.jilljoyousjourney.blogspot.c

MamaGina

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Re: "Social anxiety"
« Reply #11 on: May 12, 2010, 07:45:19 am »
I, too, have social anxiety. It's from the combination of not being able to smile, unable to articulate certain sounds, not being able to hear someone speak to me if there is environmental noise (like a party, reception, childrens' concerts, etc), tinnitus, looking drunk cuz I can't walk straight. I also have anxiety cuz I can't get everything done because of my vertigo, fatigue and headaches. My attitude was much better earlier in my postop journey. Now I'm losing hope and I'm tired of having to be a warrior just to get through the day. My hope is in Christ, so my hope isn't for this life but for when this body is dead.
L 3.0 cm AN resection via retrosigmoid approach 10/2000;
CSF leak repair w/mastoidectomy one week later. 
chronic headaches, vertigo, fatigue, facial paralysis, SSD, and more!

moe

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Re: "Social anxiety"
« Reply #12 on: May 12, 2010, 08:51:02 am »
So true about the social anxiety being due to a combo of factors.
I did so much better the first year post surgery because~ hey we survived brain surgery, and are happy to be alive.
Living this "new" life is hard though, day after day, year after year.
I say-Let's all just take care of ourselves and spoil ourselves as much as is feasible, enjoying what we can to the fullest extent.
MamaGina- so sorry to hear of your struggles. I too have hope that I'll feel so much better when I die and go to heaven :)
Have you ever thought of trying the BAHA- is that feasible?
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

nancyann

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Re: "Social anxiety"
« Reply #13 on: May 14, 2010, 04:21:04 pm »
Jill:  If you look up Patrick Byrne, MD at Johns Hopkins,  you can look for the 'before/after' pictures on his website & see other before/afters with facial paralysis.
My case was extreme,  you'll see others' pictures look more 'natural' than mine (however I'm still so grateful for my 'gorgeous' face !!!
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
right facial paralysis
good to go.

Jeanlea

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Re: "Social anxiety"
« Reply #14 on: May 15, 2010, 09:19:46 pm »
Jill,

Welcome to the forum.  Glad that you found us.  It's good to be around others who understand whaat you are going through.  I see that your facial nerve is intact.  I also had total facial paralysis after my surgery.  In the beginning, my husband was good about getting me to go out in public like we'd always done.  We would go out to eat, grocery shopping, etc.  Getting out early like that was good.  I just used a lot of napkins when I ate.  lol  Even though half of of my face didn't work, the other other half was still able to show emotion.  Most people will see that something is wrong and then look away. 
It's now been nearly five years for me now.  I have a smile back, even if it isn't my old smile.  At one point I was highly focused on how my face looked.  Now there are many times I don't even give it a thought. 
I think your attitude will get you far.  I love the idea of your hat.  How cool!

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

 


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