Author Topic: I wish I would have found this forum sooner.  (Read 5704 times)

keithk

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I wish I would have found this forum sooner.
« on: October 11, 2010, 08:16:34 am »
I first noticed hearing issues in January 2010. We were at our granddaughters birthday and I could hear all the back ground conversations but barely could hear the person next to me. I saw an ENT in February. I was told i had mild eraring loss in my left ear, not enough to require a hearing aid and to come back in a year. Starting in April I was experiencing tingling on the left side of my face, vertigo, loss of taste and balance issues. After another ENT appointment and an MRI I was diagnosed with AN with Retrosigmoid surgery scheduled for August. I did the usual internet research including watching a video on the surgery. I concluded that the surgery was no big deal.

We decided to take a short vacation days before the surgery. While driving to Galena I get a call from my Nero surgeons office telling me the surgery was canceled and rescheduled for late September due to a scheduling conflict. My wife is my advocate and after several phone calls she was able to get the surgery back to the original date.

On August 19Th I had the surgery. I was not prepared for what was to follow. I did not want visitors, except for my wife. I had no interest in TV. This included no interest in the NASCAR race or a Packer preseason game. Three days after surgery I thought I should be feeling better then I was. My surgeon stopped in during his rounds and I mentioned to him that I was not feeling any better. He told me I had major surgery and 50 years ago people died from this surgery. I guess he  set me straight.

Anyway, two months after surgery I have SSD the facial weakness is probally back to 80% ( I need to shower with swimming glasses because my left eye isn't water tight). I have issues with balance. In the morning it is usually good but gets worse as the day goes on from fatigue. I have started the process to be fitted with a BAHA.

The lowest point I have had was this past Saturday. We went to dinner and a play with friends. We went to a restruant that my wife has always wanted to go to. We had to leave almost as soon as we got there. The background noise and music was just to much for me to take. During the play it was hare to hear and understand some of the dialog.

The doctors, family and friends have told me that it will take a long time to feel normal. I know they are right but it doesn't make me feel better.

Did I mention this all started around my 60Th birthday. Happy  *&^Iing birthday!
                                              
« Last Edit: October 11, 2010, 08:18:11 am by keithk »
AN surgery 8/19/10, 9.5 hrs
8mm x 5mm left side
Retrosigmoid, Drs Reichert & Harvey
Severe hearing loss in the left ear before surgery. SSD after surgery. Balance issues. Tinnitus (mild). Buzzing in left ear.
BAHA implant surgery 11/17/10
BAHA activation 2/1/11

kenneth_k

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Re: I wish I would have found this forum soomer.
« Reply #1 on: October 11, 2010, 08:25:07 am »
Hi KeithK

I'm sorry to hear about all your trouble.
You are not alone. Many of us feel exactly the same way you do.

This is a great place to ventilate and maybe even seek some good advice from other people in the same situation.

It is perfectly normal to feel sad about losses. And you have lost something important. Your old self.

It does take time to adjust, but I trust you will with help from family and friends. If you feel depressed for a longer period of time, maybe you should mention it to your doctor.

I hope you find the will and energy to think positive thougts once in a while.

Best regards, Kenneth

leapyrtwins

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Re: I wish I would have found this forum sooner.
« Reply #2 on: October 11, 2010, 09:02:03 am »
Hi, KeithK and welcome to the Forum.

I am a BAHA wearer and a Cochlear volunteer.  If you have any questions whatsoever about the BAHA, please don't hesitate to ask me.  My email address is in my profile, or you can PM me.

Another great resource is the Cochlear Community (www.cochlearcommunity.com); you'll find me - and many others - there.  It's a free discussion Forum; you just need to register.

Best,

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

Jim Scott

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Re: I wish I would have found this forum sooner.
« Reply #3 on: October 11, 2010, 02:48:03 pm »
Hi, Keith - and welcome, although I'm sorry to learn of your AN post-op problems and deficits, which are, unfortunately, fairly common.  

Fortunately, most of these issues eventually resolve and/or can be addressed with therapy, surgery or in the case of being SSD, with the legendary BAHA.  Usually, if and when one or more of the problems are resolved (i.e. SSD) one's attitude is proportionally elevated to a more positive status.  Prior to my surgery/radiation (at age 63) my neurosurgeon informed me that my recovery would be measured in months, not weeks.  He was very experienced with AN surgery and I realized that he was trying to tamp down my expectations but inwardly, I told myself that my recovery would take weeks, not months.  It turned out that we were both right.   My initial recovery was rapid (my neurosurgeon said I "broke all the records for AN surgery recovery")  but now, four years out, I realize that I was far more recovered at a year post-op than I was at 3 months.  My point being that AN surgery recovery does take time.  I was impatient and resented the intrusion on my lifestyle the AN had wrought.  I countered by assuming a laser-like focus on recovering and regaining normalcy.  That came fairly easily but not quick enough for my tastes.  I was a grump for the first few weeks post-op, straining even my angelic wife's patience...but I came through it.  You will, too.  Oh, there'll be a few 'bumps in the road' but time passes, you heal and with some work on your part (and the BAHA), you'll begin to feel like yourself again.  Meanwhile, feel free to vent here or ask any question.  There are a lot of us AN 'veterans' with a wealth of practical experience to share.  Just ask.  In the meantime, I hope you'll begin feeling better, soon.

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.

CHD63

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Re: I wish I would have found this forum sooner.
« Reply #4 on: October 12, 2010, 07:57:34 am »
Hi keithk .....

Adding my welcome to the group!  Sorry that you are in the midst of the most frustrating part of recovery.  It will get better!  As Jim said, look back by months, not weeks or days, and you will see a much more significant amount of progress.

About the hearing in the restaurant ..... this remains an issue for many of us.  It is a condition called hyperacusis (see http://en.wikipedia.org/wiki/Hyperacusis).  I lost 80% of the hearing in my AN side ear and I wear a hearing aid, which helps tremendously.  However, I also have a music plug for my good ear (it effectively blocks out the high and low frequencies, but I can still hear the mid-range well for conversation).  When I go to movies or a loud restaurant, I take out the hearing aid in my AN ear and put the music plug in my good ear.  That makes the loud noise quite tolerable.  I purchased both the hearing aid and the music plug from my local audiologist (both custom fit).

Best thoughts and let us know how you continue to do.

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

keithk

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Re: I wish I would have found this forum sooner.
« Reply #5 on: October 12, 2010, 10:24:49 am »
Thanks for the link Clarice.

Keith
AN surgery 8/19/10, 9.5 hrs
8mm x 5mm left side
Retrosigmoid, Drs Reichert & Harvey
Severe hearing loss in the left ear before surgery. SSD after surgery. Balance issues. Tinnitus (mild). Buzzing in left ear.
BAHA implant surgery 11/17/10
BAHA activation 2/1/11

moe

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Re: I wish I would have found this forum sooner.
« Reply #6 on: October 12, 2010, 02:24:00 pm »
Hi Keith,
Welcome  ??? to this group of great people. :)

I joined after my AN debacle and have found such relief to know that there are others out there who have and/or are going through the same thing.
The range of emotions is varied, along with the side effects of the surgery.

I was told to give it a year before I felt better. I thought "oh you've got to be kidding" but they were right. I still alternate between good days and bad days, and can still get angry at my symptoms. >:( >:( I have to pace myself to do things slower and I have to stay  away from  noisy places.(I too have scheduled for the BAHA on 10 NOV).
 Recovery also forces us to  stop to smell the roses, I guess. Just taking it slower. Some people bounce right back and others have a significant change in their life style. I would say I'm kind of in between. It's this whole getting used to the "new you", and can be frustrating, depressing, easier for some than for others. And hard for friends and loved ones to understand. I'm trying to stop and smell the roses, and everyone around me is still going at their crazy hectic pace! Another feeling I have experienced post op is isolation. Look up for support groups in your area, that has been a great sense of comfort too.

 So that's what is so great about this forum. We KNOW what you're going through!

You are still pretty fresh post op in the big scheme of things. Walking is the best thing, along with balance type stuff. Many people (including me) have the WII fit system which has games you can "play" to help with balance.

Rambling a bit I know, but that's ok you can do that. Hope I helped you and didn't depress you more :o
Keep coming back  I'm sure you'll receive lots of good feedback from the people who have just had surgery.
My motto in life>

LIFE IS WHAT HAPPENS WHEN YOU ARE MAKING PLANS!

Ok I'm going to go take a nap now, one of my favorite things to do  :)
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

Wwoodian

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Re: I wish I would have found this forum sooner.
« Reply #7 on: October 28, 2010, 01:17:42 am »
Yes Keith!  Recovery is way more difficult than I thought it would be too!  But, the good news is that things will get better.  I promise you.  It is a slow back and forth progression, but try not to measure your recovery by days or weeks.  Every month you will have progress.  It's not easy--but you have friends and support here.  Hang in there!
Diagnosed with 1 cm AN on 10-28-09
Middle Fossa surgery on left side 11-20-09
Dr. Friedman and Dr. Schwartz at House Clinic in LA.
No hearing loss or facial nerve problems
Severe double vision and bouncy vision
Yahoo!  Double Vision gone after 3 months!
Did a full marathon 1 1/2 yrs after surgery!

deheisel11

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Re: I wish I would have found this forum sooner.
« Reply #8 on: October 28, 2010, 09:23:38 am »
Keith,
Here is a minor suggestion.  If you switch to tear-less baby shampoo you won't have to wear the swimming goggles.  I even wash my face in the shower with it.  It has really helped me because my eye is not watertight either.  Like I said, just a minor suggestion.
translab surgery of 2.6cm neuroma, right side, by Dr. Welling at Ohio State, 6-18-10.  BAHA base placed on same day.  Facial paralysis. Gold weight 7-14-10.