Author Topic: Positive note  (Read 7917 times)

texsooner

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Positive note
« on: December 06, 2009, 11:22:24 am »
I've got nothing really to complain about AN-wise, as I've been fully adjusted for quite some time to my very few/minor issues coming out of my AN surgery almost 16 months ago. I just wanted any newbies (that may be contemplating surgery or having just recently become posties) to know that the odds are with you that you'll come out on the other side in good shape and will be able to resume your active lives in due time. It might take weeks or months, but you'll get there. This is not to slight any of the fine folks here that have struggled and continue to struggle wiith AN issues, I just know from going thru it myself that before and right after treatment(in my case tumor resection) I sometimes just thought of the worst.

I just finished a 10 mile run this morning in the cool weather here in the Houston area as I continue training for the Houston half-marathon in about a month. I thank folks like Keri, Bob(stoneaxe), Laura and others that have bounced right back from their surgeries to resume their phyical activities....you guys give me motivation to keep going when it's starts feeling tough. I may not be quite as fast a runner as I was a couple of years ago, but I'm proud that I can continue to do it after the AN speed bump.

I'd also like to thank some of the fine folks here like Jim, Phyl, Jan, Steve, Lori, Kaybo, Clarice, Rich & Scarlet, fellow Houston area forumites Brenda and Pooter and many others for their wisdom and words of encouragement to me and many others. You guys are the best. Just wanted to say thanks.

Have a great day and week ahead.

Patrick    
« Last Edit: December 06, 2009, 11:24:58 am by texsooner »
3.5cm left side AN; 11 hour retrosigmoid surgery 8/11/08 @ Memorial Hermann, Houston - Texas Medical Center with Drs. Chang and Vollmer; home on 8/13/08;
SSD(w/tinnitus); dry eye; Happy to be here and feeling good.

leapyrtwins

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Re: Positive note
« Reply #1 on: December 06, 2009, 11:32:28 am »
Patrick -

you and I have had very similar recoveries - few/minor issues from our AN surgeries - although I haven't run 10 miles in a long, long time (nothing to do with my AN surgery).

It's always refreshing to read your posts and it's great that you've chosen to remain on the Forum all this time.  I hope you continue to join us here; you are a vital part of the community and a true inspiration to others.

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

Adrienne

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Re: Positive note
« Reply #2 on: December 06, 2009, 11:55:16 am »
I echo your sentiments exactly Patrick!  It's important to remind the newbies that there are many that come out of this without many complications.

Good for you on the half marathon!  Good luck!

Adrienne
3.0 x 3.0 x 2.5 cm AN, left side.  Diagnosed Feb. 19th,2009
Retro Sig surgery with Dr. Akagami and Dr. Westerberg on May 26/09 at Vancouver General Hospital
SUCCESS! Completely removed tumor, preserved facial nerve, and retained a lot of hearing. Colour me HAPPY!

nteeman

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Re: Positive note
« Reply #3 on: December 06, 2009, 03:47:54 pm »
This is a very good and important thread.  I agree with all that has been posted so far.  I too, came out of my surgery with little to complain about compared to others on this site and do believe it is important for newbies to see that for many life goes on ALMOST like nothing happened. For me I became SSD and have very slight balance issues. The people at work and family and friends can't believe how well I have recovered.  Some have forgotten already.  Of course I haven't forgotten and I do know the before and after difference but everything that I was doing before my AN surgery I am still doing now. No one could tell the difference except me -- the audio track is mono not stereo, and sometimes I call out WHAT when I can't tell where someone is calling me from.  I just look at it as another adjustment one has to make as one grows older. No big deal.

Neal
Diagnosed 12/16/2008
AN 2.4 X 2.0 X 1.6 CM
surgery performed on 1/27/2009 Mt. Sinai Hospital, NYC
Dr.Bederson & Dr. Smouha
9:30am thru 5:50pm
http://www.facebook.com/neal.teeman

Jim Scott

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Re: Positive note
« Reply #4 on: December 06, 2009, 04:04:42 pm »
Patrick ~

Thanks for your very positive update and kind words.  Although not every AN patient has the kind of recovery you've enjoyed, many of us do.  I've been blessed with a good surgical/radiation outcome and I wish the same results for anyone dealing with an acoustic neuroma.  Along with many other folks that post here regularly, I remain an active member of the forums so I can continue to advise and encourage the newly diagnosed on their options and support those who may be struggling.  Fortunately, lots of folks  - like you - do the same thing - and it's much appreciated.  :)

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.

Kaybo

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Re: Positive note
« Reply #5 on: December 06, 2009, 04:22:37 pm »
Patrick~
What great words!  While many would say that I had LOTS of complications and I can admit that it wasn't all fun & games, life is GREAT now!  It is all how you CHOOSE to view things...Yes, it has been a long road for me but I look back & see how much I have grown as a person and the wonderful friendships that I would be without if I'd never experienced this and that far outweighs all that has happened or changed in my life.  I always worry about scaring newbies off because I don't have a great recovery story to tell, but I hope that my ATTITUDE can come thru and people can see that even with not so great things, we are still OK!  Besides, medical technology has come SOOOO far since I had my surgery - hopefully they have corrected or made great strides since I was the one on the table!   ::)

K   ;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!

Brendalu

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Re: Positive note
« Reply #6 on: December 06, 2009, 04:38:36 pm »
Patrick,

It was such a pleasure to meet you and your wife.  So many people in this area have more hope because of you and your positiveness (is that a word?) and how great you have done and the things you are accomplishing.  You are amazing!  Thank you for who you are and all you do.
Brenda
Brenda Oberholtzer
AN surgery 7/28/05
Peyman Pakzaban, NS
Chester Strunk, ENT

CHD63

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Re: Positive note
« Reply #7 on: December 06, 2009, 07:13:07 pm »
Patrick .....

Thanks for starting this thread.  So many times we look at the glass as half empty instead of half full.

When I first started lurking on this forum before my AN surgery (many months ago), I was scared out of my wits with all of the horror stories so I quit reading all of the doom and gloom.  Long after my surgery I decided to check out this forum again and the posts had really changed to a much more positive attitude.  Now I am determined to keep this positive attitude when I post because I found out it does not have to result in a less than desirable outcome.  Although this ride has not always been fun and games, I did not experience any of the horror stories.  I feel very fortunate that my life has actually improved in many ways since learning about my AN.  It certainly has changed how I view my family and friends ..... and life in general, for the good.

As Kay said, it is how we view things that happen to us that ultimately matters.

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

sgerrard

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Re: Positive note
« Reply #8 on: December 07, 2009, 12:08:53 am »
You can't post this topic often enough. One of the reasons we are here is to reassure the newcomers that they have a good chance of coming through treatment in good shape. It is also great to have a place to turn to if something goes awry, and to discover that life afterwards can be good in any event. But the fact is that the most likely outcome of treatment will be good news in the first place.

So, you're welcome, Patrick, and thanks for being a part of the group.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Tricia (horsekayak)

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Re: Positive note
« Reply #9 on: December 07, 2009, 01:11:40 am »
This is a great thread...it helps to remember all the good things we still have in our lives
Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington

wendysig

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Re: Positive note
« Reply #10 on: December 07, 2009, 07:24:49 am »
Patrick,

Thanks for starting this thread.  Like you, I didn't have any major problems after surgery.   Although my incision leaked serous fluid and fat for two months, I never developed an infection thanks to the great medical care I received.  My balance has never quite returned to normal and being SSD can be frustrating, but my BAHA has been a great help.  As you said, life has pretty much returned to normal.  Most of the people in my life have adjusted to the fact that I sometimes bump into them when they walk next to me and that I can't always hear them from the next room.  Some people tell me that I seem to be back to my old self and that they would never guess I'd ever had a problem.  All these things make me feel normal again, even if it is a "new" normal.  I am thankful to have no major issues and am gratified when I can help someone else in their journey. 

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

lori67

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Re: Positive note
« Reply #11 on: December 07, 2009, 08:07:34 am »
Patrick,

This is a great thread!  Always nice to be reminded to look on the bright side!  And it is important for those just beginning this journey to know that it's not all doom and gloom.  You and so many others are so inspiring and just show people what you can do rather than focusing on what you can't.  I think that's important even if you weren't "blessed" with an AN!   :D

I've had minor issues to deal with since my surgery - SSD, facial paralysis, the occasional blood clot, but I don't let any of that keep me from doing what I want to do.  If I'm not doing something I did prior to surgery, it's my choice.  Now, if I, like Jan, would just choose to resume running.... :D.  Oh well, one of these days.  The important thing for me is to know that I CAN do it once I get my butt in gear.

So, thank YOU, Patrick!  I know you'll do great in that next half-marathon!  Ever consider coming to Virginia Beach for the Rock and Roll half in the spring?  If you do, the Gatorade is on me!   ;D

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.

stoneaxe

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Re: Positive note
« Reply #12 on: December 07, 2009, 01:21:19 pm »
Definitely a great thread. Thanks for the kind words too.. ;D. Not only do many have good outcomes but for me it has actually been a positive experience. So much has come into my life that wouldn't have had I never had my AN. I appreciate what I have so much more today. It was just a couple years ago that I was having a hard time but with the love and support of my family and friends, some great docs, and a lot of hard work, today life is very good. I say that despite some other very serious struggles in my life. Having worked through this I simply feel like other issues are manageable.

I'm sore today from a tough 7 hour surf session last Friday. I never thought I would ever say that just a short few years ago.

I just read the story of one of the "lost boys" of Sudan. Our struggles are minor compared to what he went through...and at a very young age....we really need to keep things in perspective. Just the fact that we have the ability to sit down at a computer and share our experiences means that we are amongst the wealthiest (relatively) people ever to have walked the earth. Of the billions on the planet and the billions and billions that have ever lived we are amongst the very lucky. We have access to great doctors, food, shelter. We aren't forced to watch friends and family die from simple diseases or the anger of our fellow man.

One of the best ways I've found to keep myself happy is to pass along my good fortune. Find a cause you can believe in and work hard to share.
Bob - Official Member of the Postie/Toasty Club
6mm AN treated with Proton Beam Radiosurgery in March 2004
at Mass General Hospital, Dr's Loeffler and Chapman
Cut the little bugger out the second time around in 2009..translab at MGH with Dr's McKenna and Barker.
http://www.capecodbaychallenge.org

Kaybo

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Re: Positive note
« Reply #13 on: December 07, 2009, 01:54:39 pm »
Stoneax~
We were just discussing this in Bible class yesterday - we actually have a member of our class who was one of the "Lost Boys" - our teacher was reminding us of his great faith...in some ways, it is easier for him to trust in God because he witnessed first hand that he would not have made it without God taking care of him!  His story is AMAZING...w/out food for 40 days, lions & hyenas killing other children...it goes on and on...

We are blessed with SO MUCH and don't even know it!

K   ;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!

lawmama

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Re: Positive note
« Reply #14 on: December 07, 2009, 04:29:13 pm »
Patrick,

My surgery is scheduled for next Monday, so this came at the perfect time for me.   :)  Thanks for the positive story and congratulations on your success in overcoming your AN.

Lyn 
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.