Author Topic: people just don't understand  (Read 18583 times)

Karen

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people just don't understand
« on: November 17, 2009, 06:14:17 pm »
It's been 6 years ago this December that I had my surgery.  I have facial paralysis sice my nerve was cut, had double vision and three eye muscle surgeries to fix that.  trigeminal damage so I have a numb face and eye, which is also dry,    plus balance problems and have had an eye weight put in and taken out.  There isn't a day that goes by without thinking about some AN problem or another.  My husband says I think about it too much  does any one else think about it alot  or does it get better with more time?  Oh I forgt the deafness on that side!  They don't understand why I am so tired at the end of the day and I can't wait to go to bed and shut my eye and not have to put drops in all day long.  I was a quiet person before and now crowds really bother me.   Any one else this way?  Karen
Karen
     Surgery 12-17-03, nerve graft 1-04, 3.5 cm, facial paralysis, numbness and no hearing in left ear

Jill Marie

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Re: people just don't understand
« Reply #1 on: November 17, 2009, 09:02:54 pm »
Hi Karen,

How can you not think about the AN issues everyday!  You put eye drops in all day long, I put eye ointment in all day long so of course you think about the AN.  Add in the other issues and it's hard not to think about it.  I think the part that bothers me the most sometimes is that when I go on vacation or it's a Holiday you don't get away from the AN issues.  I find that it's kind of like all things that bother us, if we are having a bad day for some other reason the AN problems seem to bother me more.  If things are going well & I'm happy the AN issues don't bother me as much.  Keeping busy and having plans & goals really helps too!  Yes, crowds bother me & a lot of others on the board, we make adjustments to the situations.  I'm guessing your husband is like mine, realizes that because of the surgery you are different now but still loves you a lot so doesn't see you as an AN person, he see's you as his wife so he doesn't think about it as much as you do.  He wants you to be happy & not worrying about the AN side affects, but as you know that's easier said than done.  I've been dealing with this for 17 years, raised two young men, have a full time job (14 years) & happily married for 31 years.  Take Care, Jill
Facial Nerve Neuroma removed 6/15/92 by Dr. Charles Mangham, Seattle Ear Clinic. Deaf/left ear, left eye doesn't water.

CHD63

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Re: people just don't understand
« Reply #2 on: November 17, 2009, 10:04:12 pm »
Karen .....

Anyone with facial involvement, hearing loss, or balance issues is keenly aware of having had an AN ..... it changes our lives forever.  Jill had some good things to say about a possible explanation for your husband's reaction.  It is very difficult to be the caregiver/partner in life and know that your partner is suffering and dealing with these issues on a daily basis and there is not a thing you can do to change it.

Fatigue is an ever-present issue that cannot be ignored.  Jill is right that the more rested you are and yet the more involved you are, the better you will feel.  That probably sounds like an impossible combination.  However, I hope you can find a meaningful and rewarding project that you can do in stages ..... so you can rest/recoup in between.

I can identify with the crowds being overwhelming.  Just this past Sunday we were attending a reception following a concert when all of a sudden the noise and confusion became unbearable and I simply said to my husband "I'll wait for you outside." and left by the closest door.  He still has trouble understanding how I can be fine one minute and overwhelmed the next ..... but that's the way it happens.

I have learned to choose which events/activities I think I can handle ..... but I am determined not to become a hermit and withdraw because I know that would not be good for anyone ..... most of all, me.

My thoughts and prayers that you will find relief.

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: people just don't understand
« Reply #3 on: November 17, 2009, 11:35:34 pm »
Hi Karen,
Yes, totally understand! And no matter how much you try to "re-educate" your loved ones on how you are just not the same person any more, they forget as time goes on.....

I am totally, all the time thinking of my post AN life.

Facial paralysis, eye issues, deafness, tinnitus. It is there 24/7-when I wake up and when I go to bed. How can i NOT think about it?

I'm  totally obsessed with my facial paralysis and am making baby steps to get some sort of smirk, half smile or smile back.-acupuncture is my best friend right now, and I'm getting more movement and tingling along the flat area around the cheek and lip. It keeps me going, this goal I have. I had the 7/12 with partial results, and am aiming for some sort of either static or dynamic lift in 2010.

My loving husband thinks I'm going overboard with the obsession. Yea, maybe in your eyes, but try to be in my shoes for a week and see how YOU feel!!! It's been 3.5 years for me.
It is a long long road....
I try to stay busy and focused, work part time, but still need rest periods. Actually the acupuncture ( I can't say enough about it) is helping everything- my face, fatigue, depression, body aches.
Always an option.

So there are so many here who empathize with you. You are definitely not alone. It's just nice to get on line and validate these emotions, isn't it??????

Take care now,
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

Brendalu

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Re: people just don't understand
« Reply #4 on: November 18, 2009, 06:01:21 am »
Karen,

It has been a little over four years for me and I have days I really wish I could be the old me.  Then I think about all of the wonderful people I have met because of this AN business and feel very blessed.  My family still does not understand that this Wonder Woman has hung up her cape and put away the invisible jet and the boots.  I ca no longer be everything to everyone, but I can be me and even though it isn't the same me as BAN (before AN) it is still a very neat me.  I decided I like me and they will all just have to adjust.......eventually!  When they start questioning and demanding I be more like the old me I just turn a very deaf ear towards them...kind of like giving them a cold shoulder.  (((((((((((((((((((((((()))))))))))))))))))))))))))'s to you.
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Debbi

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Re: people just don't understand
« Reply #5 on: November 18, 2009, 11:11:45 am »
Brenda - you summed it up beautifully!

Karen - I think we all have to go through a process to learn how to be the "new" us.  And, so do those around us.  So much of what we all have to adapt to is invisible to others (balance, hearing loss, fatigue, dry eye) which makes it harder for them to realize that we have all changed in certain ways.  I have learned to speak up when it all gets to be too much. And, yes, I have bad days sometimes where I really miss the way it used to be. It's normal.

Hang in there.

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Cheryl R

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Re: people just don't understand
« Reply #6 on: November 18, 2009, 12:41:40 pm »
Karen,    I think my husband thinks because I am here a whole lot that that is what makes me think too much about having had my surgeries.       He doesn't really understand that it is always with me and having to put with them never leaves us.     Every day varies with how much they may be bothering us.            I call them my annoyance of the day as they may vary from day to day.   The last 2 days my nose ran when I ate more than usual.   Today not as much.        Only occ do I have dry eye in the day and may need to put drops in a couple times.    My walking isn't bad at home but can be when go somewhere.       Depends on what I am walking on and if it is outside.    Can go on and on.        I look pretty normal when just look at me.   It is just frustrating even though I am very grateful I am not much worse off.             So yes we do understand very well how it feels and can be different with what each of us has that is the most problem.                      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

Karen

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Re: people just don't understand
« Reply #7 on: November 18, 2009, 01:53:37 pm »
Thanks for the help.  Does accupunture really seem to help?  I have tried Reiki massage ( healing type), ThiChi and even meditation.  Most days I don't       care that much what people think I look like, it's just the facial numbness that really bugs me.  It's like going to the dentist and being full of novacaine!!!  So when I do talk it feels really stiff.  So far I still can't get used to that feeling.  I hope that with time that will get better.  It is so good to know that other people feel like me.  Like you say try walking in my shoes for a day.  I do still keep going , I work  full-time, have 7 grandkids and still love to shop!!!  Most of all I just wish I would feel like I used too.  Tried Neurotin but I didn't like that.  Karen
Karen
     Surgery 12-17-03, nerve graft 1-04, 3.5 cm, facial paralysis, numbness and no hearing in left ear

Jim Scott

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Re: people just don't understand
« Reply #8 on: November 18, 2009, 05:16:09 pm »
Karen ~

Like everyone that has posted before me, I understand your frustrations and hope you can eventually find some relief for your facial numbness.  That your husband, relatives and friends can't seem to understand your exasperation with the facial numbness and fatigue is not that unusual.  AN surgical ramifications are unique and since the condition is rare to begin with, few people know anything about it and fewer still can comprehend what you have to deal with on a daily basis and the emotional toll that takes on you.  Pain and discomfort are usually not tangible or recognizable to most people and frankly, even when made aware of your discomfort and frustration, there really isn't too much another person can do, except offer you empathy and support.  We offer that, here, Karen.  It's long distance and 'virtual' but, trust me, it's just as real and sincere as if we were there, in person.

Yes, things do improve and I hope and pray that they will for you.  Meanwhile, feel free to vent, ask or share on these forums whenever you wish.  We'll acknowledge your comments and the emotions you deal with - and do the best that we can to help and support you.  

Jim
« Last Edit: November 22, 2009, 03:17:56 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.

moe

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Re: people just don't understand
« Reply #9 on: November 19, 2009, 09:23:30 am »
Hi Karen,
Yes, I can say that acupuncture does truly help and is continuing to help my overall well being and the facial paralysis.
It is not for everyone, but there have been some success stories. It is time consuming for me -3x/wk at first, now 2x/wk, and I have to pay out of pocket (they were nice and gave me payment options).
So not feasible for everyone. Plus if you have a fear of needles, not a good thing.
The needles do "ouch" going in, but then I drift off with quiet music, warmed table, dimmed lights. It is very therapeutic.. That takes the place of my "nap." The oxygen/air flow( associated with traditional chinese acupuncture) to the face may provide relief for your facial numbness.
My face is tingly now, as they have finally found a way that works with the needles. They stayed away from the face, focused on needles to the lower  calf, which channels the face where I'm flaccid. Now they are going at it from both angles. Little needles in the face, along with the needles in the lower leg. Much better results.I'm optimistic for more tone and movement....
Part of this is trail and error, trying to find what works.
( I don't have facial numbness)

Anyway, my 2 cents worth
Being proactive through all this helps keep me hopeful. That is very important.
So hope this helps you. If you want any more info on acupuncture,send me a PM>
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

Nickittynic

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Re: people just don't understand
« Reply #10 on: November 22, 2009, 01:38:03 pm »
Karen, just wanted to echo what everyone else has said - you're feelings are completely normal. At least, *I* feel the same way, so as normal as that makes it, haha.  ;)
I'm only 8.5 weeks postop, and already I think my husband is tired of hearing me talk about AN stuff all the time. I think my mom is the only one who takes my "complaints" seriously (aka, doesn't just shrug or say it's all "in my head"). I just started therapy last week and I think it will really help. A lot of what we talked about was going-back-to-work stuff, as I'm really obsessed/hung up on that right now. I think a lot of has to do with feeling like a "new me"and not wanting to go back to and "old me" job.
Anyway, I wish you luck and if I get any good "nuggets" of info through therapy I'll be sure to pass them along.  :)
25 year old OBGYN nurse, wife, mother of two
5.5cm x 3.1cm left side AN removed via retrosigmoid 9/09 @ Hopkins
SSD, Tinnitus, Chronic Migraines, Facial paralysis (improving!)
Resolved - Left sided weakness, Cognitive issues
Gold weight, upper and lower punctal plugs, tarsorrhaphy

CHD63

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Re: people just don't understand
« Reply #11 on: November 22, 2009, 03:19:37 pm »
Along with this ..... for some of us who look and act the same on the outside, we are not the same on the inside as pre-AN.  Therefore, we do not emotionally respond or react like we did before and I know this confuses our family/friends ..... actually us, as well.  Sometimes I say to myself, why did I just snap at my husband?  The emotional aspect of the recovery process is very different from the physical.  But, it does slowly return to a more pre-AN-like life.

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

salamander

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Re: people just don't understand
« Reply #12 on: November 23, 2009, 07:41:59 am »
I can't add much to what has been said here.

EVERY Day, my life is effected.  It may be the now painful background noises that I didn't even hear before.  It might be air conditioning blowing in my eye that can't blink or squint right.  It might be me bouncing off walls due to my poor balance.  It might be laying in bed in what is silence for others but loud buzzing for me.  I miss my facial animation.  I miss silence.

Please be assured that this isn't something that you can "just let go" and forget about like an appendectomy or tonsilectomy.  I try to laugh about things so that I don't cry continuously.  Sometimes laughing really helps.  Sometimes that just isn't possible and grieving the losses is necessary for a period of time.

Hang in there,

Samantha
2.9 cm right side AN;
Retrosigmoid/Sub-occipital surgery 11/08;
SSD(w/tinnitus), facial weakness, dry eye, eye weight, headaches.
Some movement of face at 7 months

Migoi

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Re: people just don't understand
« Reply #13 on: December 05, 2009, 08:10:44 am »
As always...lots of great advice from others. I'm generally not smart enough to offer advice but do have a couple of thoughts sticking to my sole operating brain cell...

If everyone else truly understood what people with AN's go through then we wouldn't have been drawn to this forum and would have missed out on meeting with all the unbelievably wonderful folks that are here. See my signature panel for my theory as to how AN's select which folks to visit.

I'm not entirely sure that the verb "thinking" is the correct verb to use when discussing AN's involvement in our lives. When a balance event happens as I pass through a doorway and I crash into the jamb, I don't "think" about the AN and its effects on me, I live it.

When I started my degree in special education, in one of the first classes I took we did a small exercise. We had to create and live a disability for a short period of time... maneuver a life situation blindfolded, spend the day in a wheel chair, etc. While it didn't truly give the experience because we could end the experiment at any time...it did provide lots of fodder to swirl around our brains. A high attenuation ear plug in one ear can certainly give a person with bilaterally good hearing some things to consider.

..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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Tricia (horsekayak)

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Re: people just don't understand
« Reply #14 on: December 07, 2009, 12:34:23 am »

So there are so many here who empathize with you. You are definitely not alone. It's just nice to get on line and validate these emotions, isn't it??????

Take care now,
Maureen


This quote says it all...just wanted to add that I support you, and DEFINITELY understand what you are saying.  Remember to take loving care of yourself, and don't apologize for doing what you need to do in order to stay emotionally and physically healthy.  Easier said than done, but do know there are lots of virtual hugs and well wishes coming at you.

Tricia (horsekayak)
Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington