Author Topic: Wish Me Luck  (Read 7252 times)

Goldie

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Wish Me Luck
« on: September 23, 2009, 08:42:51 pm »
Hello, all.  I previously wrote as "Oldie Newbie" in the post-treatment section as I'm post GK, but I thought I would switch over to pre-treatment temporarily--since I'm about to have a translab on 10/1 at Mayo with Dr. Link and Dr. Driscoll.  My GK from 3-1/2 years ago has been deemed a failure since my AN continues to grow (now borderline small-medium).  I know I'm in the very small percentage of failures but wouldn't have done it any differently.  I was challenged at the conference by someone who questioned my original decision and said I should have had surgery at House when I was diagnosed.  We each have to find our own way, doctors we're comfortable with, and what makes the most sense to us.  It's an individual journey.  BUT!  The support here is immeasurable and I know I will need it more once I have the surgery and begin recovery.  I've been told I have 100% chance of temporary facial paralysis and 20% of permanent.  Not the best odds, but I'm hoping my luck will turn and I will have the temporary.  Losing the hearing and balance nerves are minor at this point, as I've lost most of my hearing on the right and my brain has adapted to my imbalance for the most part.  I work at Mayo and let the staff in our division know about my surgery today.  One of the physicians said I was the most "balanced" person he knew!   ;)

As I wrote in another post, I have excellent care, my faith is strong, and I have great support from my husband, family, and friends, not to mention my coworkers.  This site and your support is icing on the cake!

I will keep you posted as things move along.  I'm on the calendar!

Thanks, Denise

P.S.  I am also a caregiver for my mom.  She lives in an assisted living facility, but I am her main support.  If you say a prayer for me, please include her as well!  This will be difficult for her.
GK 5/06 at Mayo for small AN after balance and slight hearing issues.  Progressive hearing loss following GK.
3/09 - facial spasms began.  MRI shows tumor growth.
9/09 - MRI shows further growth.  "GK failure."  Translab 10/1/09 success!  BAHA 10/8/10.

Syl

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Re: Wish Me Luck
« Reply #1 on: September 23, 2009, 08:56:16 pm »
Goldie:

I admire your outlook and think you are so right when you say that we each have to find our own way. We have so much in common because of our ANs, yet our AN journies are unique. Keep up your positive outlook and you will be fine. I will keep you and your mom in my prayers.

Syl
1.5cm AN rt side; Retrosig June 16, 2008; preserved facial and hearing nerves;
FINALLY FREE OF CHRONIC HEADACHES 4.5 years post-op!!!!!!!
Drs. Kato, Blumenfeld, and Cheung.

leapyrtwins

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Re: Wish Me Luck
« Reply #2 on: September 24, 2009, 07:34:19 am »
Good luck  ;D

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

grega

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Re: Wish Me Luck
« Reply #3 on: September 24, 2009, 07:49:39 am »
Hi Denise,

By what you said, you have a great attitude, backed up by your care providers, faith, and support from family, friends and the forumites herein.  I hope and pray you'll do just fine!

And possibly, by being as matter-of-fact as possible, your Mom will understand by expressing her love for you and for what you do for her. 

Best to ya!  Greg
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

alicia

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Re: Wish Me Luck
« Reply #4 on: September 24, 2009, 10:22:34 am »
You and your mom are in my thoughts and prayers.  The amazing thing about surgery is that you may be able to see your mom in just a week or two and maybe she won't notice a thing  8)  You feel it inside, but people don't see it.  I may have missed it in other posts, but why such high percentages for facial weakness?  Your facial nerve will make the prayer list too  Hang in there  ;)
02/16/18 III to IV post GK Facial Paralysis
12/13/17 Gamma Knife
05/19/09 Translab Larger than expected - Drs used the word "tangerine"   House - Friedman and Schwartz
04/02/09 Diagnosed Left AN 3.2cm x 2.6cm x 2.7cm

Goldie

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Re: Wish Me Luck
« Reply #5 on: September 24, 2009, 01:19:15 pm »
We do know that my facial nerve is affected because I have had facial spasms and other issues for the past six months.  Because I had the GK previously, the tumor will be more "sticky" so things get more complicated.  If I were to wake up with no paralysis, I would be absolutely thrilled, but I'm trying to be realistic. 

I'm very happy for you that you had such a good result with such a large tumor!  It's always wonderful to hear success stories.  Maybe it'll be my turn now!
GK 5/06 at Mayo for small AN after balance and slight hearing issues.  Progressive hearing loss following GK.
3/09 - facial spasms began.  MRI shows tumor growth.
9/09 - MRI shows further growth.  "GK failure."  Translab 10/1/09 success!  BAHA 10/8/10.

cindyj

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Re: Wish Me Luck
« Reply #6 on: September 24, 2009, 02:06:40 pm »
Hi, Denise!  There are indeed many success stories around here - we will wish you luck, as you've requested, and count on you becoming a success story also!  Sorry you're having to have further treatment, but you do have a great attitude and that is worth so much!

Take care and keep in touch to let us know how things go,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

loose screws (tightened)

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Re: Wish Me Luck
« Reply #7 on: September 25, 2009, 04:21:53 pm »
Sorry to hear about your GK procedure not working out Denise. That person at the conference who challenged your decision is a Fn Idiot. I hope they threw them out of there. As you said," it's an individual journey" and no one should even think about questioning your decision period!
I don't know you, but on 10/1 my thoughts will be wishing you and your mom the best. I'm a newly diagnosed ANr.

--Mike
« Last Edit: September 26, 2009, 09:26:46 am by loose screws »
47 Y/O. diagnosed AN After MRI. 4X5X7mm within the right auditory canal. Slight hearing loss, ringing in ear, vertigo. Middle fossa with House Ear Clinics Dr Brackmann and Dr. Schwartz on 11-16-09. 6 new tightened titanium screws but no more hearing.
http://mikessurgery.blogspot.com/

Jim Scott

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Re: Wish Me Luck
« Reply #8 on: September 26, 2009, 03:38:19 pm »
Hi, Denise ~

Just wanted to comment that no one has the right to question another AN patient's treatment decision, no matter what may happen later.  The person who said that to you - at the AN symposium, no less - is both rude and arrogant.  We all know that surgery carries it's own risks, as does radiation.  Re-growth can occur with either procedure.  You chose what seems best for you at the time.  You shouldn't have to defend your treatment decision to anyone - ever.   

The quantity and quality of your support 'network' (family, friends, co-workers -  and all of us) is going to be a major factor in helping you both before and after your AN surgery.  I think you'll do quite well, Denise.  My thoughts and prayers - and those of many others -  are with both you and your mother. 

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.

CHD63

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Re: Wish Me Luck
« Reply #9 on: September 26, 2009, 03:51:27 pm »
Denise .....

Just wanted to let you know that my thoughts and prayers are with both you and your mother.

I cannot imagine the turmoil you have been through in the past 3 1/2 years.  Please know that I agree that each person must regard his/her treatment options as a very personal decision.  No one can walk in your shoes, not medical people, not others with ANs, no one.  You made what was the right decision for you at the time and now you are being very upbeat with needing to make this new decision.  I admire your attitude.

Mayo Clinic has such an excellent reputation that I know you are in good hands and will have the best possible outcome.

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

ppearl214

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Re: Wish Me Luck
« Reply #10 on: September 28, 2009, 05:56:20 am »
Hey Denise,

Not sure if I got to meet you at the symposium but whomever made that comment to you... well, let me be one to slap their hand! 

I'm sorry to hear the GK didn't work out for you.  First things first.... you did what you felt was best for you at the time. No one can challenge any decision anyone makes here. We are respectful of everyone's decision and for anyone to try to sway a decision one way or another should have hand slapped.  You did what you felt was best for you and your situation at the time... so that is all that matters.

I'm sending wellness wishes your way.... healing hugglez... and will look for updates after your procedure this week. Please hang in there. I know the ride has been rough.

Good luck to you this week!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Wish Me Luck
« Reply #11 on: September 28, 2009, 08:13:37 am »
Just wanted to comment that no one has the right to question another AN patient's treatment decision, no matter what may happen later.  The person who said that to you - at the AN symposium, no less - is both rude and arrogant.  We all know that surgery carries it's own risks, as does radiation.  Re-growth can occur with either procedure.  You chose what seems best for you at the time.  You shouldn't have to defend your treatment decision to anyone - ever.   

Denise -

I just wanted to reinforce this.  As we always say here on the Forum, treatment choice is very personal - and we support each other regardless of the treatment that's chosen.

Although my choice was surgery, and it was the best decision for me, that doesn't mean it's the best choice for all AN patients.  When you chose GK, I'm confident you chose what was best for you.  None of us can see the future and you had no way of knowing you'd have regrowth with radiation - just as I have no idea if my AN will regrow post op.

Best of luck with your surgery; we anxiously await an update.

Prayers and good thoughts,

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

SML

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Re: Wish Me Luck
« Reply #12 on: September 28, 2009, 10:53:08 am »
Denise,

Both you and your mom are (and will continue to be) in our thoughts and prayers.

It has always amazed me how all of us on this forum have so much in common, yet our journeys are so unique. We can only make the decisions we feel are the best for us at the time. Unless of course… someone has a crystal ball out there? ???

Scarlett
SML(Scarlett)-Massachusetts
1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid 3/18/09 at MGH in Boston,MA.
Dr. Barker - Neurosurgeon, MGH - Dr. Lee - Neuro-Otology, MEEI
no facial issues, SSD right side, balance issues to work on.
Outstanding Surgeons, I'm very happy with the results.

Vivian B.

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Re: Wish Me Luck
« Reply #13 on: September 29, 2009, 08:30:49 pm »
Hi Denise,

Good luck on your surgery. With such a great attitude, you will definitely be o.k. My prayers will be with you.

Vivian
CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

Goldie

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Re: Wish Me Luck
« Reply #14 on: September 29, 2009, 08:46:34 pm »
Thank you all for such encouraging notes!  I saw another AN patient had set up a CaringBridge website, and I thought that would be a big help for my husband, so we're ready to roll with that.  I even have a photo of us if you want to check us out.  One day I will figure that out with this website too.  Yes, my husband Nathan is a musician and yes, he is serenading me!  Not bad for 32 years of marriage.   ;D 

I'm sure most of you have the CaringBridge website of www.caringbridge.org.  I am "denised" if you'd like to check on my progress. 

I have my final pre-surg appointments tomorrow and am doing well mentally, although I do have my moments.  How I wish for that crystal ball!  Soon it will be over and the recovery begins.  Don't know if I'll have a chance to write again for a while, so just want to say thanks again.  I very much appreciate your prayers in the coming days.

Denise
GK 5/06 at Mayo for small AN after balance and slight hearing issues.  Progressive hearing loss following GK.
3/09 - facial spasms began.  MRI shows tumor growth.
9/09 - MRI shows further growth.  "GK failure."  Translab 10/1/09 success!  BAHA 10/8/10.