Author Topic: Coping  (Read 3177 times)

Catflower

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Coping
« on: September 17, 2007, 09:11:16 am »
Have any of you been to the point where you though you just couldn't adjust and cope with the residual effects of the surgery?  I'm having a really rough time right now; feeling very depressed about the quality of my life.  I know the old line is "there are people out there much worse off than you are" and I do realize that, but it's not helping much right now.  The SSD & balance are the two biggest problems.  I can't socialize because I can't hear.  If I'm in a crowd all I hear is one big roar.  By the time I leave I'm totally exhausted.  I'm still having considerable difficulty with head movement and balance (5 months post surgery).

Maybe I'm just not a strong person or I'm too impatient, but some coping tips would be appreciated.

Omaschwannoma

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Re: Coping
« Reply #1 on: September 17, 2007, 09:51:02 am »
Hi Catflower,

Sorry to read you are not doing well, I'm sure you are doing better than say, one month ago?  Sure, reading that line probably doesn't help with what you're feeling and probably have felt 24/7 for 5 months and looking for your symptoms to ease in a BIG way.  Don't despair as I too felt just the same way 5, 8, 12 and sometimes today at 30 months. 

I use a muscian's ear plug for the crowded and noisey places as this helps a great deal cutting out the background sound so you can hear the person talking to you much better.  I also wear this plug on windy days while walking outside as it helps cut out the sound and warm/cold air that tends to make my world jiggle and tilt more. 

I recently invested in a cane, as after 20 minutes of walking outside I stumble, feel as though I'm going to fall backwards and my legs can feel weak.  Don't really know what this is all about as I went through 6 months of rehab shortly after surgery and was doing well on a daily/monthly basis.  I also use the cane in crowded situations, malls, etc. to give me a helping hand.  Maybe I just lost patience with my balance hoping it would return to a more normal state.  Perhaps I have come to the end of my healing?  I do know my husband is not happy about the cane as he sees this as my getting worse rather than better.  Frankly, I'm tired of searching out doctors to even take me seriously, so I use the cane when needed as, quite frankly, I can use a helping hand every now and then

I do hope you feel a little better each day that passes.  Try to remember what you were like on day one of your recovery and use that to compare where you are now.  I hope your healing makes a turn for the better sooner, rather than later.  You will continue to heal for years to come.  Sorry to say this, but.....patience. 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

tony

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Re: Coping
« Reply #2 on: September 17, 2007, 11:50:49 am »
I take your point - but 5mths is not so long
I am 2yrs 3mths - and still improving
So its an ongoing process
In terms of large crowd areas - yes maybe that is a bridge too far
On the other hand balance is something you can work on to improve
Given enough rest - and somewhere for a soft landing !
Anything you do from ballet to Tai Chee, to basic exercise
will improve the mechanism
It may/will tire you initally but it will get better and stamina
will improve with it - get on a programme which extends bit by bit
every week - this is the first step to get your life back
Good Luck
and best regards
Tony

BB

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Re: Coping
« Reply #3 on: September 17, 2007, 11:45:25 pm »
I FELT THE SAME WAY AT 5 MONTH'S OUT.  I AM 13 MONTH'S FROM THE TIME I HAD SURGERY, AND AM NOW JUST STARTING TO FEEL LIKE THERE IS LIGHT AT THE END OF THE TUNNELL.  BALANCE AND HEARING AT 5 MONTH'S AND 6 MONTH'S WAS REALLY HARD FOR ME.  EVEN HAD ANGER ISSUES.  EACH MONTH I WOULD NOTICE IMPROVEMENT, BUT SO SLOW.  I TOOK A BIG STEP THIS WEEKEND AND WENT ON A BOY SCOUT CAMP WITH MY HUSBAND AND GRANDSON.  WASN'T SURE I COULD MAKE IT, BUT I SURVIVED.  HANG IN THERE. IT WILL GET BETTER.  IT JUST TAKES LONGER THAN WE THINK, AND DEALING WITH THE LOSS OF HEARING AND BALANCE IS A LOT TO TAKE IN.  I LIKE YOU, WAS DEPRESSED.  I WENT TO THE DOCTOR AND HE GAVE ME XANEX FOR A WHILE, I KNOW OTHER PEOPLE HERE ALSO NEEDED HELP AND TALKED TO THEIR DR. AND TRIED SOME MEDICENE TO HELP ALONG THE WAY,  I STILL USE IT TO HELP SLEEP, BUT I SEE IMPROVEMENT.  IT WILL COME,  JUST DO LITTLE THINGS THAT HELP YOU FEEL GOOD ABOUT EVEN A SMALL ACCOMPLISHMENT.  AS YOU CAN TELL, MY PROBLEM THAT REALLY BOTHER'S ME NOW IS MY SPELLING AND WORD STRUCTURE.  I DON'T KNOW WHAT TO DO TO HELP THAT, BUT EVERYONE SAY'S IT WILL GET BETTER IN TIME.  I ALSO CARRY A HEAR PLUG WHEN WE GO OUT TO EAT, TO PUT IN MY GOOD EAR.  IT HELP'S A LOT ON THE STRESS LEVEL FROM ALL THE NOISE AROUND ME.  WE TRY TO PICK NICE QUIET PLACES, BUT IT IS GETTING EASIER ALSO.  I THINK SOMETIMES WE MOVE FROM ONE PROBLEM TO ANOTHER.  THERE WAS A SECTION A FEW MONTHS AGO EVERYONE HAD A CHANCE TO VENT, IT SURE DID HELP ME.  I BELIEVE IT'S UNDER AN COMMUNITY UNDER VENTING, BUT NOT SURE, MAYBE SOMEONE ELSE WILL REMEMBER.  IT MIGHT HELP YOU TO READ AND ALSO WRITE YOUR FEELINGS. HOPE THIS WAS HELPFUL TO YOU.  SORRY FOR ALL THE ERROR'S. THAT IS MY NEXT PROJECT TO TACKLE WITH THIS AN THING. I THINK MY EYE'S HAVE GOT WORSE IN THE LAST YEAR, SO OFF TO THE EYE DOCTOR TO SEE IF THEY CAN HELP ME, AS I EVEN HAVE TROUBLE READING AND WRITTING E-MAIL'S.  AGAIN, GOOD LUCK TO YOU.  GIVE YOURSELF MORE TIME.  EVERYONE TOLD ME THE SAME THING, AND IT IS TRUE.  BB

Catflower

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Re: Coping
« Reply #4 on: September 18, 2007, 06:07:49 am »
Thank you folks for your words of encouragement.  It means so much to hear it from those who've been there and done that.  Thanks again.

nancyann

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Re: Coping
« Reply #5 on: September 18, 2007, 06:31:46 am »
Catflower:  We miss our pre-surgery selves, so expect the 'down days'.   Also, remember, you are only 5 months out, & as much as you don't want to hear it (again), believe me, it will get easier.  At 4 months I started going to balance therapy.  I'm doing much better now, 15 months later.  Hang in there my friend,  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

Mary 117

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Re: Coping
« Reply #6 on: September 18, 2007, 08:05:47 am »
Catflower. Hang in there. As Tony said, It takes time. That's a bummer to hear but so true. The first year is difficult. I try very hard not to measure or look for changes each day. If I have problems, I set a goal of 6 months and tell myself, if it's not showing improvement by then, i will worry. Things almost always seem to improve. I know my facsial paraylsis seemed to take forever and it was so frustrating but, now 2 years later, it's almost completely functioning-to a point that noone but me and my doctor can tell.

You sound like someone who wants to be very pro-active in improving. Sometimes the only pro-active thing we can do is rest, ask for help, have patience (the patience part is the hardest) and rest.

Thinking of you!
Mary

2cm AN middle fossa HEI Dr Brackmann, 05-24-05
2cm x 1.5cm AN, Middle Fossa, Dr. Brackmann  05/24/05
Mild hearing loss, mild facial weakness, no balance issues

"well behaved women seldom make history"

Jim Scott

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Re: Coping
« Reply #7 on: September 18, 2007, 01:50:24 pm »
Hi, Catflower:

I'm so sorry you're having trouble coping with your balance problems and hearing loss.  Most of us have - or had - similar problems, even if we do all heal at a somewhat different rate.  At 5 months post-op, you have to confront the reality that you still have a way to go before you reach full recovery.  I thought I was doing great at 5 months post-op, but now, at 15 months, I can see a vast improvement.  Healing really does take time.  My surgeon warned me that I was looking at a recovery of 'months, not weeks'.  He was right.

Although I didn't suffer a lot of post-surgery complications, I certainly wasn't free of problems, including SSD.  Since I was in pretty good shape, overall, I kept a very positive attitude and 'worked around' my lingering disequilibrium.  My balance was shaky at first but I was grimly determined to walk normally again (no swaying or stumbling) and, eventually, I could.  O.K., maybe I can't walk exactly as well as I once could, but I do fine and no one, whether friends, family or strangers, seem to notice anything odd about my walking.  I no longer need to use a handrail going up or down stairs, which is a huge improvement for me.  I prefer to use the handrail but I usually deny myself the use of it and I'm now able to walk normally up or down stairways without it.  I'm just not as quick as I once was.  So what? 

My hearing loss occurred gradually, over a period of years, and by the time I was diagnosed with an acoustic neuroma tumor I had lost all hearing in my left ear, so the only post-op adjustment I had to make was to face the reality of being permanently deaf in one ear.  I do fairly well but miss things, occasionally.  I've learned to compensate.  If someone talks to me from a distance I either immediately walk closer to them or simply say 'Sorry, I can't hear you' and ask them to repeat what they said or to 'tell me later'.  In crowds, I'm O.K. if the people near me speak up a bit....and I'll ask them to do this.  Sometimes, in a social situation, I or my wife will simply tell someone sitting on my 'deaf side' that I'm deaf in that ear and to speak up or understand that if they try to converse with me from my deaf side, I probably won't hear them.  No one has a problem with this and most are quick to understand and accommodate my handicap, which I appreciate.   Funny how you find other people who also suffer from SSD.  I discovered three people in my church who are deaf in one ear, from various (non-AN) causes.  Most are younger than I am. 

I believe that coping with a significant hearing loss, as we have, is one of the more difficult aspects of post-op complications, right along with headaches, facial paralysis, eye problems and swallowing difficulties.  Unlike most AN complications, it isn't going to get any better.  I'm just grateful for the fact that I enjoyed excellent, stereophonic hearing for close to 60 years before my AN killed it on one side.  I refuse to allow the SSD to dominate my life.  I hear well in my 'good' ear and I use that to my advantage.  I always turn just a bit toward the person I'm talking to so that my hearing ear is closer to their mouth and, so, I can hear them better.  Although I may miss a few words now and then, I usually do fine and not that many people even know that I'm totally deaf in one ear.  Its a definite coping skill and takes time.  I had a head start, of sorts, which helped.  I always sit near the front of any speaker in a group seting and I use 'TV ears' at home so that the family can keep the TV at a moderate sound level while I can use my headphones to make the sound I receive as loud as necessary.  Workarounds.  I couldn't have gotten through my recovery without them.  At 15 months, I still feel that I have more healing to do and I expect to improve in most areas (except hearing) within another 15 months

It may sound trite but healing and coping take both time and a positive attitude.  The time will pass no matter what we do or think. The attitude thing is wholly up to us, individually.  I believe in making the most of what I have.  I was and remain determined to be as normal as my body will allow and I know this takes rime and effort on my part.  I'm willing to do what it takes and I accept the fact that I may not be the person I was just a few years ago, but, today, I'm going to be the best 'Jim' that I can be.  It isn't so much about being 'strong' as it is being both patient and determined.  I have to add that my personal religious faith is a great and definite help to me, but there are many ways to find solace and hope, if you seek them out, as I trust that you will, Cat.

I wish you all the best and truly hope that your recovery will continue apace.  :)

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.