Author Topic: 19 years..... O L D  (Read 6083 times)

Taylor

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19 years..... O L D
« on: March 11, 2007, 10:40:54 am »
So it's my birthday today....
One more year away from the surgery yet one year closer to death
and one more year i have to relive "IT" for the people that know some or the wrong of the story
now people i haven't met before are starting to come into the picture... which is strange cause i mostly hung out with people that knew everything
the people that knew what i was like BEFORE...
wild
crazy
funny
just trying to be a happy kid
and i was
i look back at it now and i took everything for granted
s
M
i
L
e             
now i'm just a quiet shy girl who always seems sad
and i am
sometimes i think it's one hell of a dream
































































my poptart got stuck in the toaster tonight
Taylor
Translab/4.8 cm AN on right side removed 2/3/06
St. Louis Children's Hospital (next to Barnes-Jewish)/ Jeffery Leonard - Neurosurgeon
Cross-facial nerve graft with muscle transplant
Bad coordination on right side - constant pins-and-needles sensation on left side
21 years-old
Illinois

nancyann

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Re: 19 years..... O L D
« Reply #1 on: March 11, 2007, 11:22:01 am »
Hey Taylor/ Birthday Girl:  Look at this post under AN Community,
                                    you silly rabbit..
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

Jeanlea

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Re: 19 years..... O L D
« Reply #2 on: March 11, 2007, 03:42:09 pm »
Happy birthday, Taylor.  I'm amazed at your strength and courage.  Hope this next year just gets better and better for you.
You could type of a card with all the pertinent information to give to new people that you meet.  Wonder how they would react.  :-)

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

jerseygirl

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Re: 19 years..... O L D
« Reply #3 on: March 11, 2007, 03:48:31 pm »
Happy birthday, Taylor! You are an amazing young lady! Someday you will remember this AN thing as a bad dream because human body heals over time, it just takes longer than we wish. Best wishes to you!
I hope you do something special on your birthday!
                               Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

Featofclay

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Re: 19 years..... O L D
« Reply #4 on: March 11, 2007, 04:40:00 pm »
Happy Birthday Taylor.  You have many more that will better.  You did have to grow up quickly and face the fact that life is not fair but we only have it to live just once.  Know that all of us posting here are with you in your trials and it does help to post and listen to what others say.  It does give me a lot of insight to how I feel and know that others are facing the same trials.  Hang in there.....tomorrow will be better.
Jean 
Diagnosed 12/19/06; 1.7 cm x .8 cm right side
Retrosigmoid 2/16/07 @ House Ear Institute
Dr. Rick Friedman, Dr. Marc Schwartz & Dr. Michael Stefan
Excellent results

Palace

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Re: 19 years..... O L D
« Reply #5 on: March 11, 2007, 04:55:28 pm »
HAPPY BIRTHDAY  :)

Hang with the intelligent ones.  You can still have fun and in the long run......being with the smart people will support you where you need it, the most.  You shall live a successful and full life.  The other is just shallow anyway.  You have discovered real life sooner than most people your age.  You can still be young and sophisticated at the same time.  You will have a better life and go much farther. 

We all wish you the best and the best for us, too.



Take care and have fun,



Palace
22 mm Acoustic Neuroma (right side)
Cyberknife, Nov. & Dec. 2006
Dr. Iris Gibbs & Dr. Blevins @ Stanford
single sided deafness

chrissmom

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Re: 19 years..... O L D
« Reply #6 on: March 11, 2007, 07:27:37 pm »
Happy Birthday, Taylor !

Our whole family wishes you all the best.  Hang in there.  Stay positive...be patient.  You're gonna make it and you'll come thru this stronger and smarter.  We support you...we care about you.  Never forget the Taylor, Chelsea and Chris club.  Noone wanted to join that club but you guys were all-stars last year.  You were all so young and brave.  You have conquered more than most kids your age and you deserve so much credit.  Wow, what a year it has been for you.  You're an all-star !!  So amazing...

lmurray69

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Re: 19 years..... O L D
« Reply #7 on: March 11, 2007, 07:53:01 pm »
Happy Birthday Taylor. I am glad to see you on here again. I have been out of it cause of headaches and ear pain. You are a very smart girl and I know that you have problems now . But I look at it this away. Lord help those that make fun of others.I hope that you have the best Birthday ever :D
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

MCLARKE46319

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Re: 19 years..... O L D
« Reply #8 on: March 11, 2007, 08:31:19 pm »
Happy Birthday Taylor,

I just wanted to wish you the very best.  My daughter Meagan is 25 and had her tumor out Jan 3rd.  She feels the same things as you do and I tell her how brave and how strong she is.  You are brave and strong too.  Take care,

Maureen

Crazycat

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Re: 19 years..... O L D
« Reply #9 on: March 11, 2007, 09:22:37 pm »
Happy birthday kid!

  I can't imagine what it would have been like for me to have gone through all this when I was your age. Stay strong and keep up the good work in school!

      Paul
5cm x 5cm left-side A.N. partially removed via Middle Fossa 9/21/2005 @ Mass General. 
Compounded by hydrocephalus. Shunt installed 8/10/2005.
Dr. Fred Barker - Neurosurgeon and Dr. Michael McKenna - Neurotologist.

robinm

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Re: 19 years..... O L D
« Reply #10 on: March 11, 2007, 10:54:47 pm »
Hey Taylor,

Happy B'day and good luck for your future..I am 22 yrs old and can feel how you feel..sometimes we feel this tumor has taken our youth away from us (how i wish it had occurred 10 yrs from now)..we are energetic and strong by age..but disabled in some ways..I had always been a witty converser and liked by all the people whom I met...now, I sometimes get afraid to start conversaton with new people and make frens...but i have discovered another side of life...that coping with change is the most important thing...many things happen in life without our choice...accepting these changes with "smile" (if we can smile, no silly, smiling with heart) is the true happiness.

Robin

eggroll

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Re: 19 years..... O L D
« Reply #11 on: March 11, 2007, 11:26:45 pm »
Happy Birthday to you / Happy Birthday to you,...

It sounds like everybody has pretty much given you their best wishes and support, but let me add mine to your very full basket.  You'll get through this, and all will be fine.  Keep your chin up and be proud of the fact that you are a survivor, somebody that has faced down adversity and won.  You're strong, you shine; people will see that and be drawn to you.  Always remember your fight, because you had an AN and you kicked it's a$$.  You rock, and that's the truth.
-Steve

PS Don't go jamming a butter knife into the toaster after those stuck poptarts until you first unplug it.  Speaking as an electrician, you don't want to do battle with alternating current. ;D


MLB57

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Re: 19 years..... O L D
« Reply #12 on: March 12, 2007, 08:37:36 pm »
Hi Taylor--I visited your post a few times and each time wanted to say something but couldn't think of anything original or helpful because I can imagine how your life has turned upside down and a young person shouldn't have to deal with all of this... Tough enough at my 50-something age... I try to remember that I am thankful this didn't happen years go as surgery outcomes weren't so great.. You will do fine with whatever further treatment you need--and you have learned (unfortunately at a young age) that what doesn't kill you will make you stronger and really gives you a whole new perspective on life... So truly hang in there as the sun will come out tomorrow...  Take care--Mary from MA
1 cm rt AN (retrosigmoid Jan 2001 UMASSMed Ctr/Worc, MA)
Residual left--continued growing--finished 30 FSR w/Dr Loeffler (Mass Gen/Boston MA) on Oct 22 2007... --April 2010--tumor shrank to 8mm and is a dark spot!!  Latest Update: April May 2017 scan shows no change!--Next MRI 2020!!  Life is good!!

Larry

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Re: 19 years..... O L D
« Reply #13 on: March 12, 2007, 09:25:18 pm »
Hi Taylor,

Happy belated birthday.

It's not easy for any of us but at the end of the day, it comes down to whether you want this thing to beat you or are you going to beat it.

I reckon you can do the latter so as you put it - SMILE, focus on the good times and go for it.

Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

Kathleen_Mc

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Re: 19 years..... O L D
« Reply #14 on: March 13, 2007, 02:08:41 am »
Taylor: As someone who's "whole life and sense of ME" changed at a young age compliments of AN (I was 23) let me say girl
IT GETS BETTER, it seems like it never will but it will.
I know things will never be "the same" but there will come a time when you will be ok with all of this, you may wish it had never happened and you likely always morn the loss of "the old you" but eventually there comes a sense of aceptance as long as you let it happen.
You are in a grief reaction and all grief reactions have "phases"....denial came at diagnoses and likely your all finished with that, then there's anger, depression etc. At the end of the big mess there is aceptance. It will take a long time Taylor and there will be times when this all seems like a very distant nightmare, and times when it seems like surgery just happened.....the distant nightmare becomes more the case as time goes on.
I know no 19 year old wants to go into "therapy" but seriously consider it, therapy is most effective when it starts soon after the "problem". I went to someone about 3 years post-op and I know I should have been there much sooner, it helped greatly (I suffered post-traumatic stress disorder from all this and I had things "in check" very quickly but if I had gone sooner I wouldn't have suffered so much.
Take care and happy birthday
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)