Author Topic: THe Carnival ride stops soon....I hope  (Read 22304 times)

leapyrtwins

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Re: THe Carnival ride stops soon....I hope
« Reply #30 on: March 29, 2008, 12:29:38 pm »
David -

this is a very riveting story; and I think your writing talent is growing every day  :)

We should contact the ANA and ask them to publish it in their next issue of "Notes" - that way those who haven't been fortunate enough to find this forum can read about your experience also.

Can't wait to read what happens next,

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

lori67

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Re: THe Carnival ride stops soon....I hope
« Reply #31 on: March 29, 2008, 01:45:43 pm »
Aahhhh!  David!! You're killing me!!!!  I just finished shaking my computer monitor yelling "WHAT HAPPENED NEXT???"  Ugh, you Hollywood folks and your cliffhangers...   :D

Now seriously, you should write the book and screen play, cast yourself as the main character and hire the rest of us as extras.  I could use a vacation in CA.  I think the ANA would kick in a few bucks towards this project - then they could sell copies of the DVD to newcomers.  I think I should have an extra luxurious trailer for coming up with this idea... ;)

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.

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #32 on: March 29, 2008, 04:33:37 pm »
Hey thanks for the compliments.  And  good ideas.  But I do have a secret.  I am a writer.  A vastly unpublished writer.  But that's what I spend my free time doing.  I act to support my writing habit.  I do write  published newspaper articles and submit a lot of magazine articles and a couple novels.  Bang bang bang (that's me banging my head over submissions).  I  like the idea of submitting a story to ANA.  I will follow that lead.  Thank you.  And the screenplay we can call "What?"
Here's one of my favorite newspaper articles -- I'm a Pittsburgh boy at heart and this meant a lot to me.

http://www.post-gazette.com/pg/06029/646019.stm

Meanwhile, in answer to Debbie's and Melissa's questions about pre-op lack of balance and facial palsy.  I don't know.  I think I stated getting psyhcosomatic once I was diagnosed with the tumor and I learned all the symptoms.  I started to imagine things.  But my daughter noticed that I was taking shorter steps prior to the diagnosis.  That may have been related to balance.  I did have dizziness.  Getting up too fast from lying down -- and especially on an inverted sit-up bench.  And here's one somewhat pathetic story.  I was murdered on Woman's Murder Club (episode hasn't airred).  I spent an afternoon dead on the floor.  Couldn't move because of the camera angles and the continuity.  In the evening I finally got up and staggered out the door of this mansion right into the swimming pool.  Fortunately there was a cover over it but even with the cover, I looked like an out-of-control zombie bouncing and staggering around.  It wasn't pretty.  That was a year ago.  The diagnosis wasn't until September.

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

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #33 on: March 29, 2008, 04:44:47 pm »
Oh yeah, Ann Marie -- about that "I will never starve"...
Unfortunately there is a descriptive word for actors and writers and probably t-shirt desigeners - starving -- as in:
starving artists
starving actors
starving writers (or is that drunken writers?)

I'm afraid I've chosen the starving professions for my second career.  At least I'm not trying to pawn off some 100 fat gram, 1000 calorie sandwich on unsuspecting Americans like I did in my first career.
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

Debbi

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Re: THe Carnival ride stops soon....I hope
« Reply #34 on: March 29, 2008, 05:15:58 pm »
David - YOU are amazing!!  I am totally riveted and totally captivated.  And, for only the second time since I've been diagnosed, you brought some tears to my eyes.   :'(  And, not the bad kind of tears, but the kind that make you feel hopeful.  Don't stop writing.

Deb - sniffling a bit in NJ...
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

leapyrtwins

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Re: THe Carnival ride stops soon....I hope
« Reply #35 on: March 29, 2008, 06:25:01 pm »
Now seriously, you should write the book and screen play, cast yourself as the main character and hire the rest of us as extras.  I could use a vacation in CA.  I think the ANA would kick in a few bucks towards this project - then they could sell copies of the DVD to newcomers.  I think I should have an extra luxurious trailer for coming up with this idea... ;)

Lori

Ok, if Lori gets the extra luxurious trailer, then I'm going to have to insist that I get two knit hats!

Seriously, David, while I'm a little surprised to see that you are already a published writer, the shoe sure fits you  ;D

Thanks for the link to your article about Rocky's; very well-written.

And, yes, please do follow up with the ANA; I'm sure they'd love for you to submit your story.

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

Kaybo

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Re: THe Carnival ride stops soon....I hope
« Reply #36 on: March 30, 2008, 11:16:31 am »
i knew the secret writiing life  i told him i think there is a whole story in utah just waiting to be written   i think i should get a great disabled trailer!!!
k
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

LADavid

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Re: THe Carnival ride stops soon....I hope
« Reply #37 on: March 30, 2008, 02:27:24 pm »
Hi Kay
You're back!!!!!!  We've been following your progress through Dave's posts on your blog.  How are you feeling?  I know the view of that harbor.  Beautiful place to recover.

Welcome back.
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 #38 on: March 30, 2008, 03:00:41 pm »
The Conclusion (so far)

It was March 6th, 6:11PM.  I had just returned from a tough hike up Rocky Peak in Simi Valley.  I was exhausted but feeling good about the accomplishment.  I stood at the kitchen counter and guessing from the time, pouring a glass of wine.  At first I wasn't sure if I was imagining things.  But it happened again.  Very slightly.  Just a few subtle tugs.  I felt a twitch in the corner of my mouth.  They were like tiny spasms.  Three months and three days after surgery, I had a twitch.  My face was coming back to life.  I didn't want to get too excited just yet.  I posted a question on the board.  I asked about the twitches.  I don't remember who it was off hand, but they confirmed that I had real twitches.   I told everyone.  The non-ANers didn't get it.  They rarely do.  I think my daughter was the happiest.  She wouldn't have to listen to me fret anymore.  It was as I earlier posted, time to Twitch and Shout.

Since then there have been more positives.  I can move my cheek.  I've been able to run a bit more -- even though my brain is still loose in my head.  I'm not wearing the moisture chamber.  I use eye drops once a day and they aren't the gooey stuff.  I don't know if the eye surgery is ever going to happen nor do I know if I will actually need it.  Balance is still a bit iffy, but I'm seeing little improvements.  And that was what this was all about.  Little improvements.

It stared with Melissa asking questions about surgery and recovery (where are you anyway?).  And Debbi joined in.  And Hope has her date this week.  I'm praying that your surgeries go as easy as mine did (without the stretched nerve).  But if your recovery is like mine, I just wanted you to know that although others around you will be living your life in episodes, you will be living with recovery day to day -- and the hours and minutes do drag on.  It takes patience and faith -- a lot of it.  But you will, as the surgeons told me -- be fine -- only on your nerve's timetable. Best wishes to all of you on your upcoming dates (you will get one Debbi).

Now if I could only get my taste back -- a future chapter.

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

leapyrtwins

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Re: THe Carnival ride stops soon....I hope
« Reply #39 on: March 30, 2008, 04:14:16 pm »
David -

thanks for ending the story; well, sort of  ;)

I just wanted to say that you have been making great progress and that I have no doubt, that in time, your taste will return.

Patience,

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

Kaybo

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Re: THe Carnival ride stops soon....I hope
« Reply #40 on: March 30, 2008, 11:35:25 pm »
David~
I kind of missed out on the middle & even though i hate to miss your wonderful writing style, I know the story...& I just have to add that yes, you will be OK...it may not be EXCATLY like it was before or you may even have to wait years...but keep looking for those little miracles everyday -- they are there!!

K

PS - yes, i am up @1:3o -- anesthia always does this to me, but at least I didn't throw up!!!   ;D  I told EVERYONE I get very sick!!  Also, I got my weight -- Dr. Byrne thinks I should do a necklace drop, but the other doc thinks I should do a grill for my teeth!!! ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Melissa778

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Re: THe Carnival ride stops soon....I hope
« Reply #41 on: March 31, 2008, 06:34:26 am »
David, I've been a bit under the weather......Cold and sinus stuff on top of my daily dizzies has put me out of commission for a few days. 

Such a wonderful riveting story!  THanks so much for sharing....I only hope and pray you continue to improve every day.

Lori....I sure do know who Rick Springfield is!  I am a lover of all types of music.....I love music from the 60's-80's.....And I think it's great that your still 29!  Maybe I'll do the same......just turn 29 again, and again.....

I'm sure I'll attend the music festival to enjoy myself and get away.  I'm just so apprehensive to make plans to do things as I'm not sure what I'm going to feel like doing or what my outcome as far as hearing and facial palsy is going to be.....I'm just getting really nervous and there are so many unknowns.....kinda scary as I'm sure you all understand.  ANd I'm horrible in the patience department.....except where my kids are concerned.....I am terribly impatient and I just want to get it all over with.  It's all just fear of the unknown I guess.  My fatigue has been getting me down lately, we've sold our home and we are in the process of moving....so on top of that, and being sick I think that I need a vacation.....maybe a weekend away to relax before the big day. :)

On a seperate note.......for those who have children....Mine are 5 and 2.....My five year old is very sensitive, as my husband calls him a "momma's" boy......and he has overheard my husband and I talking and now has lots of questions about what surgery is.......Any advice on how to break all of this to him and explain it?  He's very close to me and he's very sensitive.....so I do worry about he'll feel about everything and how it will affect him.

Thansk all.....Have a wonderful day.

Melissa

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 :( :(

lori67

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Re: THe Carnival ride stops soon....I hope
« Reply #42 on: March 31, 2008, 11:19:08 am »
Daydreamer,

Before my surgery, I was contemplating planning a weeklong vacation at the beach with the family.  I wasn't sure if I'd feel up to it, but I found it gave me a goal - I didn't want to miss out on a week at the beach, so I made sure to do my exercises and whatever else I could to feel better.  It worked!

As far as your little boy - I had a 4 year old and a 9 month old at the time of my surgery.  We told the 4 year old that I was going to the doctor to fix a boo-boo in my head and that her aunts would be at the house with her and her little sister to visit and play with them while I was away.  I also gave her some "jobs" to do while I was gone - helping her aunts by showing them where we keep things, helping to feed the dog.. just little things.  I think that made her feel like she was a big girl for  helping me out so much when I wasn't there.  I also tried to keep her schedule as normal as possible -  getting her to preschool and gymnastics, keeping her usual routine at home as much as possible.  She did fine.  When she came to visit me at the hospital, she was a little concerned about the big bandage at first, but once she realized it was still me, she was okay.  She'd help me take walks down the hall and lay in my hospital bed and watch tv with me.

I think it's normal for kids that age to be apprehensive about it, but my plan was to show her that I wasn't afraid and that I trusted the doctor and that I was going to be fine once my boo boo was better.

The 9 month old, obviously didn't know what was going on - as long as someone changed her diaper and fed her, she was fine with it!

I wouldn't go too into detail about your surgery with your kids.  Just keep it at a 5 year old level.  They usually prefer to not know the details anyway!
Good luck!!
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.

elderbirds

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Re: THe Carnival ride stops soon....I hope
« Reply #43 on: March 31, 2008, 09:58:09 pm »
Hi Daydreamer,
I dreaded telling my boys 7 & 9 (my 9-year-old is very sensitve and a worrier like his momma!) I told them the other day and his only concern was who was going to take him to his soccer game (the same day as my surgery) and  if they were going to cut my ear off to "fix it", then he went back to playing his video game.  It's great to be a kid.  They are very resilient.  I too worry about everything, most of all the great unknown.
hope

Debbi

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Re: THe Carnival ride stops soon....I hope
« Reply #44 on: April 06, 2008, 05:40:34 pm »
Hi Hope-

I've been thinking about you all week - hopefully your surgery went well and you are on the road to recovery.  When you are up to it, let us all know how you are doing, okay?

Hugs,
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