My surgical experience...

[vicki1967]

I had my Retrosigmoid surgery on Friday, July 11th. I believe the entire surgery lasted some 3 1/2 hours. Although I was to have an ENT surgeon, along with a Neurologist, I never saw the Neurologist from the time I entered the hospital until I went home. I thought that was quite strange. I can give an account of these first 6 days...
Friday - This has got to be done already. I'm sick of waiting. I want this tumor out. My aunt took me to the Cleveland Clinic at 6:00am. After a few more stops at the receptionist stations, I would finally dress into my hospital attire and wait in a room with a nurse. Around 7:00am, I was led right to the ER room where everyone was scrubbing up and getting things ready. A short while later, I was wheeled in. Within a few minutes, I was 'out'.
When I awoke in the early afternoon, I remember opening my eyes periodically and seeing objects turning, or floating. I couldn't focus on anything so I just decided to keep my eyes closed and sleep. I was wheeled into my hospital room where I stayed until Tuesday. I didn't want any visitors because of my state of mind. I just wanted to sleep throughout my recovery and not be bothered by anyone or anything. It's a good thing the doctors made me get up, though, because they do not want the patient to get blood clots. So I moved around as much as possible in my room. I wanted nothing to do with the TV or the food that they gave me. Although I was supposed to go home that Monday, I stayed an extra day and left yesterday. The doctor's believe my facial paralysis is temporary. Tuesday evening I had a breakdown on my way to pick up all of my prescriptions. I cried hard as I struggled to use my stupid walker. That tantrum was short lived, though. Because as soon as I took my pain control pills and my anti-dizzy pills, I slept like a baby. Besides the terrible ringing in my left ear, I am now able to manage this partof my recovery. I refuse to use the walker anymore, and I just walk slowly until I gain my balance back. Today is probably the first day that I feel I've made a good decision. Although those first few days were a living, breathing nightmare, I see greener roads ahead.

I purchased a beautiful candle with Mary and Jesus on it and I will light it at 10:00EST and say a prayer for all those affected by Accoustic Neuroma. God Bless you and all your family and friends.

[goinbatty]

Bless you.  I pray for your speedy recovery.  Rest up.
Sandra

[Omaschwannoma]

Good morning!  Hope today finds you a "little" more rested, a "little" more pain free and a "bit" more balanced.  With each day comes new challenges to our physical bodies as well as, our mental state.  Coping with fatigue, pain, balance, strength, shock of surgery, and now re-learning to live with the "new" you is difficult.  Try to rest even if it's five minutes with your eyes closed, no judging yourself or thinking about what's to come just five minutes of thought-lessness can do wonders for the fatigue.  The fact you got on the computer to let us know how you are doing is a challange, I know it was for me--took me longer!  Thanks for letting us know how you are doing and I hope you are able to see the small improvements with each passing day.  Cheers!

[Debbi]

Vicki-

Rest well and often.  The first few days are the worst, and you should see slow but steady improvement now.  It does get better - don't lose sight of that!

I'm iimpressed that you are already online - that is more than most can do.

Continued healing,
Debbi

[vicki1967]

I realize that, if I want to get anywhere (like...outside) I'll have to accept my stupid walker that the hospital provided me with. I just came up with a plan that will MAKE me want to show it off! I'll decorate it with Johnny Depp Pirates of the Caribbean stickers! Don't be hatin' this latest fad!!

[Jim Scott]

Vicki:

Patience is something we all have to learn to develop as we recover.  Frankly, you're doing pretty good for less than a full week out of surgery.  I had a speedy recovery but I know I wasn't as active as you seem to be at this point in your recuperation.  Your brief meltdown was not untypical and probably good for your emotional/mental health, so don't worry about it.  It may not be the last episode you have during your recovery, although I trust that it will be.  I say that not out of any sense of condemnation at all but based on the hope that your recovery is rapid enough to negate any feelings of loss and grief, which we all feel to some extent. 

I can understand that using a walker could be frustrating and generate feelings of resentment over what you cannot do, but using your obvious sense of humor and creativity is definitely a good way to deal with the situation, which you know will be temporary. 

Thanks for sharing your experiences with us.    I look forward to reading more.

Jim

[Syl]

Vicki,

Thanks for sharing your experience. How's your hearing?

Those days in the hospital were awful for me too. At 4 wks post-op, I can assure you, it gets better. I'm still using a cane, but tonight I walked close to a mile.

Thank you for the prayers and know that others pray for you too.


Syl

[FlyersFan68]

As far as balance, take a walk around the block a few times at night with your spouse, friend or family member. I went alone but I was very eager to get back to normal and wouldn't recommend this to you for safety reasons. The darkness makes it harder on your vision requiring more input from your one side and feet. I remember this helped speed up the adjustment phase during my recovery. Eventually, get on the tread mill and stare at something on the wall as you walk. This helped too. These things will greatly help you in the daytime. Also, if you trip on something at night there really isn't anyone to see it    Good health will return.

[wendysig]

Vicky,
Although I have not yet had my surgery I have considered this whole thing so far an emotional ride and I'm sure other will agree.  Just take one step at a time and things will get better day by day.  You;ll be in my prayers and thoughts.

Best wishes,

Wendy

[vicki1967]

I was able to make it to the public pool so that my daughter could take my young son for a little swim. I sat in a lounge chair in a shaded area and watched the two of them. My daughter is 21 and my son is a little over 2. When I noticed my son crying in the water, seemingly annoyed by the temperature, I thought I'd take over. We were at that pool many weeks before my surgery on July 11th, and I didn't want him to leave thinking swimming was a bad experience. The water was actually pleasant; however, I couldn't last more than 5 minutes. The water swishing around was making me dizzier and I had to get out and get back to the lounge chair.

A few minutes later, my daughter gave me her IPod so that I could listen to music while they played. She showed me how to use it, and then the two of them ran off. It was at that point that I realized I had absolutely NO SOUND in my left (AN) ear (except for the constant sound of someone blowing up an inflatable raft in a frenzy = my tinnitus). Before the surgery, when listening through a telephone from my left ear, it sounded like someone was screaming from the bottom of a tin can - though the words were distorted and the sound was distant. Now, I didn't even hear that. I was caught off guard, as I didn't notice any 'drastic' changes in hearing since this surgery. I turned the volume up loud - just to be sure - and yelled for my daughter to come back. I needed some support and I needed it now. My daughter seemed to be taking FOREVER to get out of the water, and my panic was intensifying, so I started yelling "if I'm putting the loud sound piece in my right ear, shouldn't I still hear sound when it's in my left ear???!!" As I found myself needing to repeat this, I noticed my daughter quickening-up the pace to shut me up since I was embarrassing her for having a head-set challenged mother who flunked the IPod 101 course.

I hope that, after my complete recovery, I will be a good candidate for the BAHA implant.

Today mark's one week since my surgery. I seem more annoyed by the hot sun beaming down on me, and I find spinning ceiling fans quite bothersome. I drove a short distance today, just because I thought I could, and ended up side-swiping the curbs a few times. I realized driving will be a long term goal. To brighten things up and 'change' a few things around the house, I suggested reorganizing some things around the house - so my daughter helped.

I do believe that each day is really getting better. I believe that these 'specific little instances' that I am expieriencing may help others to become more familiar with what to expect if they choose this surgery.

God Bless You All.

[Pembo]

Vicki, I remember realizing I was deaf and it was a scary thing. Mine was trying to call my husband from the hospital and I thought the phone was broken since I couldn't hear the dial tone. I went for a BAHA consult about 9 months after surgery and had the implant at 15 months post op. There is something to look forward to.

Don't try and push yourself too hard. The body needs to recover slowly. I weaned myself off the walker by making short jaunts in the house first. It definitely felt safer to use it outside. Are you doing any exercises for balance? There are some excellent ones that will help your recovery.

It sounds like you are making great progress. Just expect some ups and downs on the road to recovery and you'll be fine.......stay strong

[MAlegant]

Hi Vicki,
Thank you so much for sharing your journey. Mine begins on Tuesday so reading yours is very relevant.  How is your facial paralysis?  I hope it's getting better and that you are as well.
All best wishes for your recovery,
Marci

[fbarbera]

I did not have surgery but from reading the accounts of people on this site, I know that every single day after surgery brings more strength and improvement.  Stay strong and be well!  Francesco

[vicki1967]

Thank you all for your support. You may not believe this, but the candle (in prayer for those affected by AN) that I began burning at 10:00pm - several days ago - is STILL burning! I will, however, need to flicker the flame temporarily since my sister is picking me up to stay with her for a few days.

I feel as if those who do not suffer from hearing loss due to AN just do not understand. It was only a few short days ago that I realized all of the hearing in my AN ear was gone. I understand there is a possibility that it could come back, but right now I'm just trying to deal with it being gone. When I explained this to two friends, they both said 'but it really wasn't that good before, though'. But some sound was there. And now it's not. I am now faced with one weak, nerve-damaged ear to rely on for hearing my two year old son's rendition of the Itsy Bitsy Spider. And, as he grows, hearing him say 'I love you'. For hearing him in school plays and holiday concerts.

I will never put on a head set again to (attempt to) listen to IPod music. I will cherish the sound of every bird singing and duck quacking. The sound of rain, thunder, and waterfalls. 

Heck, I think I'll just let that flame burn until it's done. I will carry it on to my sister's house when she comes to pick me up (if she lets me in the car with it  ) Heck, this flame is more important than the Olympic Torch, so I'm going to treat it like one!!

God Bless You All.

[yardtick]

Vicki,

So sorry about your AN experience.  We never know what life is going to throw at us.  You are alive thankfully and you have your family and friends.  I visited last Monday with my son, a mother who lost her only child to cancer a few months ago.  Anthony and Amanda were inseparable since grade 4.  She battled the disease, not once but twice.  The 1st battle was at 13 months and the 2nd battle at 15.5 yrs. The last battle was 2.5 yrs long.  Amanda would have been 18 Sept 8th, and she passed two days before my son's 18th birthday.

Embrace your son, love him and adore him.  Your family and friends love you no matter what.  I've seen it and received it first hand.  I too have lost my hearing in my left ear.  To quote Amanda "Chin up buttercup!"

Anne Marie

P.S.  Thank you for the candle and prayer, it means so much to me!