Author Topic: THe Carnival ride stops soon....I hope  (Read 22289 times)

leapyrtwins

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Re: THe Carnival ride stops soon....I hope
« Reply #15 on: March 27, 2008, 02:48:35 pm »
David -

thanks for somewhat finishing the story; I'll have to tune in again to read the ending.

Your taste will most likely come back - mine eventually did; I can't remember when, but I do know it took a while.

Hope you have a great birthday.

Deb -

I am SO jealous of Mary.  I forgot how many days she was in the hospital, but regardless, she got to shampoo at least a few days before I did.  Good for her!

Jan
« Last Edit: March 27, 2008, 08:56:19 pm by leapyrtwins »
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: THe Carnival ride stops soon....I hope
« Reply #16 on: March 27, 2008, 03:08:33 pm »
Noooooooo!!!!!

This is more gripping than an episode of Lost!!  (That's a huge comple\iment - I 'm a big fan!) David, I've gone from the edge of my seat to the floor (yep, gotta get on that balance ball asap!)

But, you deserve the night off - have a fabulous birthday with lots of Greek food!  hey, now that you mention it, I could go for some domades myself...'

Melissa, how you doing? 

Hope, I know you talked to Mary last night - she sounds amazing, doesn't she?  She is now my offical recovery poster girl!

Deb - from the floor.....
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

elderbirds

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Re: THe Carnival ride stops soon....I hope
« Reply #17 on: March 27, 2008, 09:23:13 pm »
David,
I was glued to the screen too!  Thanks for sharing your sucess story.  These experiences are what's getting me through.  Did you have much trouble with balence or vertigo following surgery?  I am hanging in there.  I just spoke to Mary and she had a terrible time with dizziness post op.  this makes me a little nervous, but I just have to take what I get.  I may have had some minor balence episodes pre-op, but I am expecting the worst is yet to come .  Could they give you anything for the dizziness?  What prescriptions were you sent home with?  My docs said I wouldn't be discharged on any meds.  That's fine with me.  thanks for thinking of me.
Hope

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #18 on: March 27, 2008, 11:02:46 pm »
Hi Hope
Just wrote a post to you but I think I forgot to hit the post thingy.  I have an excuse.  I turned 60 today -- hey am I entitled to senior meals at Denny's?  Anyway, yes they do have a medicine for dizziness.  I think it was presrcribed to me -- but I didn't take it.  That wasn't really an issue.  I had other things to deal with.  I think your "take what I get" is the best attitude.  I went into it with a life or death attitude and when I woke up in ICU, I thought I was in the clear.  Nothing really serious -- as you will see from the board -- but some things can take faith and patience.  I'll write more tomorrow.

Meanwhile, for those of you who are concerned about shampooing - you can always do what I did -- I got a number 1 clipper cut (Marine buzz cut) the day before my surgery.  I didn't even think about hair for a month.  But then again, I am a guy.

Later
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

Brendalu

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Re: THe Carnival ride stops soon....I hope
« Reply #19 on: March 28, 2008, 05:12:10 am »
David,
Happy Birthday.................senior meals at Denny's start at 55 so you've missed five years!  Congratulations on what my Mom called her sextieth birthday!
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

Melissa778

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Re: THe Carnival ride stops soon....I hope
« Reply #20 on: March 28, 2008, 06:14:13 am »
David has me hooked.....I need to read more!  And a Happy belated birthday to you David.......

On a depressing note :(  My husband was going to take me to a Country Music festival here in Ohio that lasts 4 days this summer.....it was going to be my b-day gift (my 30th b-day gift AGH :() But he is concerned I won't be up for it and wont' enjoy it due to the SSD I will have after surgery......Any opinions on that one?

Thansk to everyone for sharing all of there experiences.  I hope to be able to wash my hair as soon as Mary did....And with little ones in the house I surely have baby shampoo already. :)

I'd like to know more about the loss of taste?  WHy does that seem to happen?  I am a extremely picky eater......so any taste issues afterwards ought to really be interesting.

David,  did you have any facial issues prior to surgery?

The carnival ride is really spinning today......We got 4 inches of snow here overnight....and some yet this morning....driving to work this morning in the snow and the dark made for a interesting (carnival) ride, I find I get more dizzy when I am unabel to focus on something.....and with the snow whipping around it was a bit difficult to find that focus, I definetly pulled over a few times to collect my head and wait for the spinnign to pass......hopefully all of this goes away after my surgery.

Have a good day all.....

Melissa....buried in the snow  :D
1.6cm X 1.6cm diagnosed Jan 30 2008
Translab Surgery scheduled for May 15th with Surgery went well, got ALMOST all of it.
GK to zap the rest on 10/22/08
2010 MRI showed no new growth tumor measuring at that time at 1.1 x .4
2011 Holding steady
2012 new growth 1.7 x .7 :( :(

Debbi

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Re: THe Carnival ride stops soon....I hope
« Reply #21 on: March 28, 2008, 07:50:55 am »
HI Melissa-

I can offer some antecdotal comments on the SSD/music thing.  My dad has been SSD for many years and he still LOVES to go to concerts and listen to music.  In fact, listening to music is one of his great joys (as a much younger man, he played a mean trombone in a bee-bop band).  He was quick to tell me that SSD has not diminished his ability to enjoy music fully. 

I am sure some others will chime in here on that as well.  It seems like the music festival might be a great thing to look forward to as you recover.

We seem to have dodged the snow here in NJ - thank goodness!

Deb, still waiting for a date with the knife ;)
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

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #22 on: March 28, 2008, 12:58:27 pm »
Hey Melissa
Big opinion on the SSD and music thing.  Go to the concert!  I've had tinnitus and an 82% hearing loss in my AN ear for 23 years (now total SSD) -- and it did not affect the enjoyment of the music at all.  You hear all the sound through your good ear.  In most concert settings there really is no stereo effect -- so you do hear it all.  The only thing that will change is when you listen to stereo music through headsets.  One channel is lost on your SSD ear.  I went to a concert a few weeks ago.  It was great -- although I wear a hearing aid in my good ear and it took some time to adjust it.  My experience with SSD meant that I turn my head a bit to listen to someone -- turned it alot for tiny-talkers and mumblers (at least I used to -- I ignore them now), position myself at a table with my good ear toward the conversation, and used it to my advantage to tune out complaining ex's.  The one place it is a real annoyance is in the car when you're driving trying to hear a passenger -- and of course tiny-talkers and mumblers are always an annoyance.
Enjoy the concert.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #23 on: March 28, 2008, 03:37:22 pm »
I should be writing for Lost????

OK, we left off when a friend was coming by to take me to the eye doctor on Monday.  I came home from the hospital on Friday and hadn't been out all weekend.  I stepped out the door of my building and it nailed me -- a painfully blinding flash of light in my AN side eye.  I wasn't wearing sunglasses.  It was so overwhelming that I was disoriented and didn't know where to step or turn next.  That was when I discovered something else.  My balance wasn't what I thought it had been.  I mis-stepped, stumbled and fell on to the sidewalk.  My friend had to help me to the car.  That afternoon, I got a cane and wrap around sunglasses.  I also discovered something else.  I craved a burger.  After the eye doc appointment, we stopped at a Carl Jr's.  I got a really big burger.  Not only was lack of taste an issue, I found something else.  I couldn't eat it.  With the palsy on one side, I couldn't open my mouth wide enough to eat.  And when I tried, I ended up biting my lip or tongue or both.  I also discovered that I couldn't drink a Coke through a straw.  It didn't have any taste anyway. And neither did the fries that somewhat tasted like salty pieces of something mushy.  The frustrations began.

But it wouldn't last long.  I was assured of that by the surgeon and the internist when I had my appointments with them later that week.  Only a month or two they said.  I could deal with that if only that long I guessed.  After all it was fun playing pirate -- I added a black patch to my wardrobe for those really bright days.  The eye goop was annoying.  The lack of taste was annoying. Stumbling around was annoying.  The occasional headache was annoying.  Being unable to drive was annoying.  Loss of words and thought was annoying.  But nothing to be concerned about.  It would be over at the the end of January.  Uh huh.

So Christmas came and I spent a great day with my daughter only I couldn't taste the roast beef dinner -- juicy chewy stuff that tasted like salt.  Friends stopped by and would take walks with me around the neighborhood.  One great discovery -- my agent (she's Greek) stoped by with some homemade Greek soup -- I could taste it.  To this day, Greek food -- especially Dolmades are about all that I can taste.  Then on New Years Day I ventured out on my own.  I traditionally run a few miles on New Years Day to start the year out right.  Not even close.  Cane in hand, I made it 4 unsteady swearving blocks.  It was an accomplishment.  I thought that was the start of something.  Then it rained all week.  I was cooped up.  I also noticed something else, friends had begun drifting away.  I was spending more time alone.  Even the rides to the doctor dried up.  Early in January, I took the bus to the eye doctors -- a true adventure in LA.  As the eye doctor was measuring my eyes, it was the first that I sensed something was wrong.  He wasn't as positive as he had been on my first visit.  Then came the suggestion -- eye surgery -- a tuck on the lower lid and an eye weight on the upper lid.  Why do that I thought?  I'm going to be "fine" in less than a month.  "Hmmm" Dave again hummed to himself. "What could possibly be wrong?"  A visit to the internist would answer that.

Later that week and another adveturous bus ride, I met with the internist.  He wasn't as smiley as the first visit a week after surgery.  He smiled but it was a practiced smile -- sort of like he had news to tell me that wasn't so good that he wanted to make it at least look good.  And for a paranoid instant -- it almost looked like an "opps."

Stay tuned till tomorrow when we find out what the "opps" was.  And Hope, I'll finish this before next week.

Have a great evening.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

lori67

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Re: THe Carnival ride stops soon....I hope
« Reply #24 on: March 28, 2008, 04:49:56 pm »
I think David should write the next book we use for our AN Book Club!!  David, you don't need to be acting out there in LA - you can be writing!!   ;D

As far as the concert/music thing - I was concerned too, but when Rick Springfield came to town last month, I couldn't miss that - I didn't care if I had a headache afterwards that lasted a week!  (Yes, I know no one knows who Rick Springfield is...).  Anyway, I did fine.  I did turn off my BAHA to cut down on the background noise though.

Melissa - I'd say go for it - you only turn 30 once - unless you're me - I keep telling everyone I'm 29.  I should have turned 30 quite a few times by now if that were true.  And if you don't get your fill of country music - come on down to Nashville.  there's a little bit of that here from time to time.   ;)
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Jan D

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Re: THe Carnival ride stops soon....I hope
« Reply #25 on: March 28, 2008, 07:33:41 pm »
Melissa and all of my other new friends - 

I am fairly new to this site, but my surgery was in 1966.  I was 15 at the time.  There have been so many new advances in surgery since 1966, it is mind-boggling to read all of the options that are available.  I  had not heard of most of them until I joined this site.

My experience was quite different than most because of my age and priorities at that age.  The loss of my long hair (down to my waist at the time) was very traumatic - they shaved heads back then, even for women - so shampooing was not an issue.  To answer another question posted here, they told me that my AN was growing very quickly (possibly my age?) and I was in surgery 2 weeks after diagnosis.  I had SSD before the surgery, so I was already used to that part.   What was a surprise to the doctors was my eye - believe it or not, they didn't even recognize the fact that my eye wasn't tearing until days (days!!!) after the surgery.  It's really a miracle that my eye didn't have major damage.

Fast forward to today - 42 years later.  I have minimal facial movement (right side), but unless someone insists on taking a picture of me or I see my reflection in a window, I pretend that there is no problem.  Most people are genuinely nice and it's not an issue.  The ones that really make me mad are the ones that stare!  I try to ignore them.

Precautions for my dry eye - change pillowcase every night to avoid infections; wear sunglasses outside even on overcast days; wear eyeglasses to minimize dust floating in the air; lubricate, lubricate, lubricate!  So far, it has paid off.

Lots more to share, but the main reason for the post is to let you know that surgical and other medical advances made in the last 40 years are a huge advantage for you.

I wish you all the best.

Jan D

P.S.  David - really enjoy your writing style!
AN removed July, 1966, size of golf ball, seventh nerve severed, shoulder nerve graft in 1967, corner of eyelid stiched twice, deafness in right ear, right eye does not close nor tear and right side of face has virtually no movement.

leapyrtwins

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Re: THe Carnival ride stops soon....I hope
« Reply #26 on: March 28, 2008, 08:52:10 pm »
I think David should write the next book we use for our AN Book Club!!


Great idea, Lori.  David, this might just be a new career path for you; after reading the excerpts above, I'd definitely buy the book.


Jan D -

I can't even imagine an AN at age 15, and in 1966?  And a totally shaved head?  Boy, we've come a long way, haven't we?  Thank so much for sharing this with us.

BTW, nice name  ;D

Jan B   
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: THe Carnival ride stops soon....I hope
« Reply #27 on: March 29, 2008, 07:12:49 am »
ONe thing I've noticed since diagnosed is that my attention span and ability to concentrate is REALLY bad.  However... David's story has me fully engaged and I can't wait for the next installment!!  David, can you step it up a bit, though - I've run out of reading material.... :D

Debbi - safely inside the house ... for now!
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

yardtick

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Re: THe Carnival ride stops soon....I hope
« Reply #28 on: March 29, 2008, 08:28:30 am »
Jan D,

Thank you for sharing your story.  You are an inspiration.  I like your writing style also.

David,

Talent, talent, talent!!!!   A triple threat, an actor, a t-shirt designer (I'm still waiting for mine) and now a writer.  You'll never starve my friend ;D

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

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #29 on: March 29, 2008, 12:19:35 pm »
It was a cold Monday in January and a bumpy bus ride to the internists office.
"It could be a year, you know."
He looked at the floor as he said it avoiding my eyes.  There was an awkward quiet.  No more than two months had become maybe a year.  He was in on the allusion with the rest of them.  They had all said two months.  It was a big "opps." My two month recovery, the palsy, the balance, the taste, the eye, the living on disability, the lonliness, the watching national commercial parts slip away could now last a year.  I had another reason for being in his office.  My neck had been in terrible pain.  He sent me across the street to St Vincents for some XRays.  Turned out to be some compressed discs.  So I did what any normal person would do -- I went home and pouted.  I spent a couple days doing it.  Then I got mad and decided to do something about it.

That Wednesday, an acting buddy of mine stopped by and took me over to the foothills above Burbank.  We hiked them for about an hour.  I still heavily relied on a cane.  But I tried something new.
Running.  It was after a few steps that I realized the surgeons had forgotten to reattach my brain.  It bounced around in my head.  Running was not a good idea.  Still the hike was good.  I felt less helpless. My friend and I decided to hike more.  He was an actor and out of work because of the strike and was looking for something to do and his wife who worked couldn't stand the thought of him lounging around the house all day.  Then it started to rain again.  So much for that idea.

But during the rain, I came across something new and wonderful.  It was totally unplanned.  No one led me to it.  I very accidently found it.  It was Monday, a week after the one year news bomb had been dropped on my head.  I was sitting at the computer searching through AN sites that would tell me that the doctor was lying and that a one year recovery only happened if your operation lasted eight hours or the patient also had a frontal lobodomy.  I knew it couldn't take a year.  One of the sites I looked to was the Acountic Neuroma Association.  They didn't tell me what I wanted to hear.  But I did notice a tab that said "Forum."  I clicked on it.  And there they were, my new family with advice and support and knowledge and questions and most importantly, caring.  I remember reading a post from a guy in Atlanta called Webwrestler.  In his first entry he had told of his frustrations with palsy.  There were a few suppostive posts in between.  Then he was back to tell everyone that after 8 months post op he was feeling zaps and tingling and twitching.  He was thrilled and so was I.  I wanted to tell him that he was an inspiration so I registered.  I wrote my first post.  A few moments after that, Phyl welcomed me to the group.  Then there was Nancyann and Jan and Deb and  there was Tammi who had surgery the same week that I did and we started writing comparing notes.  And suddenly I had a new family of friends who knew what I was dealing with and the offered advice and comfort.  And I found that I wasn't the only one who was on to the Pirate thing.  This board was actually a ship called the Princess Batty Wench and it had a captain and crew.  And it didn't take long before I was offering my somewhat limited knowlege to pre-op newbies who came aboard.  I also discovered that compared to some other people and what they had been dealing with, I had no reason to sit around feeling sorry for myself.  I started following stories and decisions and frustrations and hope.  I saw Kay discover Nancyann's T3 and followed her decisions and path to her surgery yesterday.  My life had become depressingly lonely at home.  All but one or two friends had drifted away.  But I looked forward to each morning as I logged on to the board.  It did and it still does light up my day.

So with my new family supporting me I was ready to go out and tackle the challenges.  The rain finally stopped that week and on Thursday my actor friend and I took on a mountain.  We hiked   a 3000 ft climb  on a four mile course up the Verdugo mountains.  We made it to the top. As I stood there overlooking the San Fenando Valley, I knew I could do it.  I would recover and it wouldn't take me a year.  But the rain started again and with the rain came the lonilness and the boredom and the doubt.  Still my new family encouraged me.  I walked as much as I could, even in the rain.  I met with the eye doctor and set a date for surgery -- thwarted by my insurance company.  I took on face exercises and balance exercises in ernest.  I talked to my surgeon.  He gave me some advice and encouragement.  He lso told me something that I hadn't heard before -- if I hadn't seen any improving the first month, it could take six months to a year for recovery.  He also assured me that I was doing nothing wrong.  The next Thursday, my friend and I hiked another mountain, Rocky Peak, that sat between the Simi Valley and the Santa Clara Valley.  That one was even steeper and tougher.  I was starting to feel much better.  Then that night it happened.
more later.  Have a great day.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments