Author Topic: How do you....?  (Read 8861 times)

tenai98

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Re: How do you....?
« Reply #30 on: March 13, 2010, 09:34:37 am »
I have to say my Doc has been really great with all of this....I am her first AN patient...She hauls me in every 3-4 months to check in on me and any new info....I'm also her first patient with a BAHA...I think I'm the first in my area as the nurses (when my ENT has them visiting me 2-3 weeks after BAHA surgery) where amazed and even brought students nurses to have alook.
JO
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

yardtick

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Re: How do you....?
« Reply #31 on: March 13, 2010, 12:24:44 pm »
My family dr has been great too.  I am his first facial neuroma also.  He watches me like a hawk.  I see him every 6-8 weeks.  The insurance company is constantly sending him forums and he continues to fill them out.  He tells me over and over that he is in my corner and he will always advocate for me.  He has known me actually since high school.  He was a few grades a head of me.  He helped bring my sons into this world and he has seen first hand what I am battling.  When he runs into my husband at the hospital the first thing out of his mouth is how's Anne Marie.  Louie is actually amazed.

Anne Marie

Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

bell

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Re: How do you....?
« Reply #32 on: March 13, 2010, 03:08:11 pm »
Hi everyone:
I sure can relate to what everyone is talking about.
I feel I am in denial because I can not do the things I use to do.  I hope they will get better over time as I am only 14 months out.  I have been a hermit this last year and I do not want to go out to a bar with my friends or even lunch.  I really miss drinking alchol!  I hope to get the headaches under wraps because that even limits me more.  I also miss my smile!!!!!  People at work have been good and my husband great!  I wish I had a better doctor I always feel like I am bother them.
I am looking forward to a better summer and try to remember the good things in life while  trying to be more empathetic to others with disabilities.   Thanks to everyone who shared.  The best of luck to everyone,
Bell

nancyann

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Re: How do you....?
« Reply #33 on: March 13, 2010, 03:27:58 pm »
I JUST NOW came across this.   When I was 1st post op,  b/c of my face,  I did hibernate quite a bit.  I guess it's easier for me than others b/c I have no kids.  I still don't go to engagements that I know will be loud, lots of people.  I have decided to take care of me & make sure I'm as comfortable as possible.  At work I will walk away if noise gets to be too much.  I have always had a love of nature, quiet walks, calming music, etc.  so this has helped.  I try to keep my days as quiet & enjoyable as possible.
I really feel for all of you who have obligations & can't get away from it - I don't know how you do it.
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
2.4 Gm. Platinum chain 2017
right facial paralysis

james e

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Re: How do you....?
« Reply #34 on: March 15, 2010, 02:33:24 pm »
I had a stroke April 4, 2009. It was in the area of my brain the neurologist calls the "executive decision area." It involves making decisions, planning, thinking ahead. I could speak, but I had (and still do) have word finding issues. I want to talk about dinner, I can see that steak in my mind, but I cannot think of the word "steak." My wife will ask what I want for dinner, but I cannot tell her because I don't know how to tell her what I am thinking. I go to speech class, and they help me speak better, by making me think harder. The first instructions were to touch my knee, and then touch my nose. I touched my knee, but could not remember what to touch next. I still fail the classic questions doctors ask you if they think you are having a stroke. I want to get better. I think hard. I do puzzles. My wife helps me...she is one of God's angels...but even after a year, she has difficulty thinking I have some mental disability. My best friend next door thinks I am "over doing" my word finding issues. Talk about ANGRY.

I got over the anger. Our lives are forever changing. I used to rock my kids...now I rock their kids. I used to run every day... if I ran today, I'd probably run in circles, but my knees and feet wore out, so I walk the dog. I used to water ski, now I just drive the boat. I loved my mother, but lost her 10 years ago. Things change. One of the great movies out there is "Parenthood". Not the tv show, but the movie. The old grandma talks about life as if it is a roller coaster...some people get scared, some go along for the ride, and others enjoy the ride. I'm enjoying the ride. It is the only ride I have, and nobody is going to stop me from having fun!

PS: I still get a little upset about my hearing loss, my mental disability. Life is not perfect...it just changes every day. Enjoy the ride!

Giggles

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Re: How do you....?
« Reply #35 on: March 16, 2010, 02:39:21 pm »
Wow... that is a lot to digest. With tears in my eyes as this is near to my heart, let me try to have a stab at this. Let's look at the flip side.

How does one deal with the expectations of anyone or anything? Being a SO or friend of someone that goes through this, you have to realize that their life changes too, but nobody sees that. Nobody feels sorry for them because they didn't have brain surgery. Nobody wants to help them. They just get upset when they are not doting on the one with the tumor 24/7. You are right... the game has changed on you... there is no denying that. But the likes, dislikes, passions, etc. of those around you have not changed. They might hate to do those things with you because it is as if you died... like you are not there, but to do them without you, they are made to feel guilty by you and everyone else around. But to deny those things they love... is that fair either? Should their passions die because they are tied to someone with a brain tumor? Is it selfish to think they shouldn't just die? I am not trying to be hurtful, but please see that those around you are affected as well. There are people that might not call you as much anymore because the Brian they knew and loved is gone... and new friends that love you dearly for the wonderful man you are (and they don't have the memories of the past). A SO is in a different situation... they are expected to stay there and be supportive and give up everything for you and they may want to, but know the expectations are there regardless of whether their will, determination, or love is there or not. And to make it worse... how are they supposed to react when they are faced with it on the computer, but no warning.... couldn't have been an accident.

I'm sorry for people not reacting to you in the appropriate ways or the way you expected.... we are all just trying to make it through this.... just like you.
J



ppearl214

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Re: How do you....?
« Reply #36 on: March 16, 2010, 02:58:08 pm »
How do you effectively communicate that you HAVE changed, although not materially so, from the person that you used to be?  

Ya know my Pooter :-* , I've sat back and followed this thread to see what direction it takes... and lemme tell you, you have received some top-notch insight from those that have "been there, done that".

So, you KNOWWWW I'm going to finally put in my 2 cents (or pence, depending on which side of da pond you are)........

to answer your question I quoted....  you just tell everyone that.... yeah, you've changed... into the newer, improved Pooter that we all continue to appreciate and lurve.  They can either embrace you for the new and improved (and yes, even with SSD, you are certainly improved :) ) man that you are. You know the work I do for the disabled... and the one thing I can tell you... accept for what we are, don't expect us to change for anyone and embrace our true beings...  and that goes for us as well....  to "treat others as we would want to be treated".... and if they don't.... well, shame on them and its their loss.

There is a thread I started a while back (oh, my .... I think if you dig deep in "Archives" forum, you'll find it, but sub-link here:  http://anausa.org/forum/index.php?topic=7681.0) about "when others leave your life" once they learn about your AN journey.... and oh, the sting I have felt.  With everyone that responded to the thread, the one thing I learned and took from it was this..... "never try to guess human nature"... as we have no clue why some react one way and some, another way.  

Heck, you got us :)

Hang tough, m'dear!
xo
Phyl
« Last Edit: March 16, 2010, 02:59:45 pm by ppearl214 »
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Jim Scott

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Re: How do you....?
« Reply #37 on: March 16, 2010, 03:54:18 pm »
Hi, 'Giggles' - and welcome.  

Thanks for having the courage to post what amounts to a view from the 'other side' and, by doing so, adding some balance to the discussion, which, by the nature of the ANA forums being here for the support of AN patients, lean toward the AN patient's POV almost exclusively.  You raise some salient points regarding the spouse, significant other, relatives or friends position in dealing with the loved one that has physical deficits resulting from AN surgery (or radiation) and no longer is exactly the same person as they once were.  It's a complicated issue and I won't attempt to offer glib answers to the questions raised but I can state from my experience that each person - the AN patient and the spouse, relative, friend, whatever has to chose to adapt and adjust to the realities involved.  No, the 30ish husband may not like noisy-but-fun restaurants anymore or hiking in the mountains, whatever the specific issue at hand.  That is discouraging to the spouse, relative or friend and obviously requires some adjustments on their part.  Guilt should not drive their attitude.  The AN patient should make that clear.  If his or her family or friends want to do something he can't or would no longer enjoy doing, he should sincerely encourage them to go without him, explaining that he doesn't want to spoil their fun.  Obviously, this is especially important for kids, who can't be expected to simply abandon their favorite pursuits because dad can't do them or struggles trying.

I went on a week-long visit to Disney World in Orlando, Florida in '08 accompanied by my brother-in-law, sister-in-law, their adult daughter (my niece, age 30), my adult son (age 30)  and my wife. We made the 1,000-mile trip by car (SUV) and it was uncomfortable, plus, my brother-in-law is fanatic about driving 'straight through' so we slept in the vehicle, which, at my age, is not fun.   Once there, we visited 4 of the Theme Parks, one each day.  It involved a lot of walking in very hot, humid weather.  I was O.K. and went on a lot of fairly 'strenuous' rides, such as the infamous 'Magic Mountain' roller coaster, 'Test Track' (twice) and other rides, including the stationary but exhilarating 'Soaring'.  My wife and sister-in-law asked me quite a few times if I was "O.K." and of course I answered in the affirmative.  My brother-in-law , some 6 years younger than me, has an old foot injury and has to use an electric 'scooter' that prevented him from participating in many of the rides and attractions.  Some days, he chose to stay in his room for the day, meeting us for dinner.  No one made anything of it because we understood his reasons, and knew he wasn't being anti-social or petulant, he just couldn't do the things we were doing.  Ironically, my 30-year-old niece took a 'day off' because she was too tired to walk another day and my son caught a bug and spent the last 3 days of our expensive vacation in his room, in bed, most of the time.  I couldn't complain because he paid his own way and really was sick. The point being that I pushed myself (with no negative consequences) to do everything and be a part of the fun but I know, without a doubt, that had I been unable to, my wife and relatives would have understood, made the necessary allowances and not considered me to be 'a drag'.  This is the kind of mutual respect and understanding necessary when the post-op AN patient is trying to socialize with family and friends but, perhaps, cannot do everything he or she once did.

As I posted to Brian, had we had a heart attack or a knee replacement, most people we interact with would be quite accommodating and not expect us to do everything we once did.  However, because few people even understand what an acoustic neuroma is and the usual hearing and balance deficits are invisible to others, our ongoing inability to do or enjoy some things are not always given a lot of consideration.  We're not visibly impaired (except for those suffering facial paralysis)  and our change of attitude seems a bit selfish and hard to understand by folks who have not experienced an acoustic neuroma and the surgery that often is necessary to remove it and it's consequences on our quality of life.

I state all this as an AN patient who survived a large tumor, surgery and radiation and once safely through the medical procedures with minimal complications, was determined to regain my quality of life.  I was able to do so with a combination of prayer, hard work and an attitude that simply would not countenance anything less than a successful transition back to doing what I've always done.  However, my situation is somewhat unique.  I was retired at the time of my diagnosis, did not have young children to care for and had the great benefit of an extremely supportive spouse.  She has undergone numerous surgeries over the past 20 years, has endured much pain but always refused to 'give in' to it and has led a relatively normal life.  She no longer works but has an active social life and we've enjoyed many good times together, including the aforementioned week-long visit to Disney World in 2008.  In short, she understands.  Not every spouse, friend or relative does.  This is why I want to reiterate that mutual understanding is necessary to alleviate frustrations and hurt feelings between the post-op AN patient, family and friends.  Of course, it isn't always so simple or easy.  This is why I stress that we have to be willing to accept that some of the people we're closest to may not always have the 'right' reaction to the 'new you' that an acoustic neuroma and subsequent surgery sometimes imposes on us.  Unfortunately, there is no pat solution that I can see.  It is what it is.  However, I appreciate your posting, that attempts to offer a view from the perspective of one dealing with an AN patient, often with deficits and unhappy about them, as you would expect.  There are always two sides to every story and I appreciate you helping us to see both.

Jim            
« Last Edit: March 16, 2010, 03:56:04 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.

leapyrtwins

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Re: How do you....?
« Reply #38 on: March 16, 2010, 08:50:14 pm »
Giggles,

I'm with Jim.  It took a lot of courage to post your response and - being an AN patient without a SO or other family member that is greatly affected by my outcome - I find your perspective on this issue very insightful.

I've never considered things from your point of view and I appreciate you giving us the other side of the coin.

And, Jim, as always a very well written and thoughtful post.  I couldn't have said anything even close to as good as you said it.

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

Debbi

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Re: How do you....?
« Reply #39 on: March 16, 2010, 09:19:23 pm »
Holy cow!  How the he** did I miss this last week?

Brian...thank you for your heartfelt post.  You have put into words what so many of us have and continue to struggle with.  I had tears as I was reading what you wrote as well as the many reponses from ANers and friends/spouses of ANers.  Your comments (and I'll paraphrase here) about being the life of the party and the guy who was always front and center at every gathering "before" really struck a chord with me. You could have been writing for me (well, except for the gender thing of course.)  I am not that girl anymore, and it does make me so angry sometimes.  And some of my friends don't understand why I am different- they get irritated that I am "hanging on" to something that, in their minds, happed nearly 2 years ago.  I can't change that, but I can choose to limit my time with those people.

Having gone through most of the first year with noticable facial issues atually made this easier in some ways because at least people had a visual reminder that things were different. Don't get me wrong  , I'm extremely grateful to have gotten so much of my face back in the last 10 months.  :) However, it doesn't change the intense feelings of isolation I feel at loud gatherings.  I visualize myself retreating into my little cone of silence - kind of like a kid who has an imagineray world to escape to.

The truth is that if you were missing an arm or a leg people would make allowances because they would have a visual reminder.  If you lost a leg your friends probably wouldn't expect you to go out dancing every weekend.   ;D With things like hearing or vision or balance loss ... nobody can see it.  Out of sight, out of mind. And yes, we keep reminding people that we're deaf on one side, but they can't see it and they forget.  Sometimes its just easier to tune out.  For me, this seems to be exacerbated by the constant state of blurriness of my AN side eye.  It is lubed up all the time with the net effect that I am essentially blind on the right side.  So, I find that I am tense and on high alert when I am out in public - and I jump when someone appears on my right side without me having heard or seen them coming.  

I am lucky that Willie has been with me every step of the way and is very tuned in to what I am experiencing.  He watches out for me.  My closest friends - they are pretty good most of the time, with one notable exception who just refuses to even acknowledge that I had freaking brain surgery.  I am excising her from my life - just not worth the work.  

So Brian, all the feelings you are having - I totally relate.  Not that this solves anything, but as you've already seen from all these posts you've got a lot of friends here who completely understand what it feels like to be missing two of you primary senses.  As for those on the outside, just keep talking to them, telling them how you feel (I know, you guys don't always like to do that mushy stuff.)  Sometimes it helps people understand if they realize that noisy environments no longer feel "safe" and large groups of people can make us feel extremely isolated and lonely.

Aw, shoot, Brian I'm sending you a big old cyber hug.  We are, after all, tumor twins - you know I've got your back.

hugs to everyone who is trying to adjust to the new "normal" and to those who love them, even on the crummy days..

Debbi
« Last Edit: March 16, 2010, 09:24:00 pm by 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

wendysig

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Re: How do you....?
« Reply #40 on: March 22, 2010, 03:11:13 pm »
Very funny Catherine -- I know what you mean though.  This would happen to me if the other person were in the same room with me if I didn't see them.  I know you understand what I mean!   :D

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

JerseyGirl2

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Re: How do you....?
« Reply #41 on: March 22, 2010, 03:44:01 pm »
Wendy,

Yes I do understand! Hope that all is well with you -- you haven't posted anything in quite a while. I'm looking forward to seeing you and all the others at the NYC/NJ luncheon in May.

Catherine (JerseyGirl 2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ