Author Topic: I've made my decision.  (Read 2832 times)

Tisha

  • Sr. Member
  • ****
  • Posts: 297
I've made my decision.
« on: December 16, 2008, 08:38:23 am »
First, I want to thank all of you, every single one of you, who has responded to me.  From the first frantic and desperate post to the ones where we were discussing nitty/gritty details ad nauseum (those of you who were PMing with me and ready choke me, LOL!)  I will "pass it forward" and try to help those newbies that find this forum frightened and confused.  My journey is FAR from over, but at least this one hurdle I've passed.  The decision of what to do and where to go. 

I'm going to Stanford to have my procedure done by Cyberknife with Dr. Chang and his team.  Hopefully early January sometime.  I'll know more in a few weeks.  My decision is based on his experience and his studies.  Plus, there is a comfort level with so many people on this board having had positive experiences with him and all the recommendations.  I know that there have been a couple of failures and not everyone has been happy, but this is my GUT feeling.  Everyone said I would have one and this is mine.

I do have to say, in all honesty, that the 5 vs. 3 fractionated treatments has been a stickler for me, as many of you know.  And I bet you, that down the road, we will see that 5 is better and that there will be studies that support that.   But for now, since I'm half way between MA and CA, my gut is leading me to Dr. Chang.  Thank you all for helping me come to this decision.  What a relief.  Now, if things don't go exactly as I pray they will, I will not let myself look back and think "what if".  I have to hang on to feeling that I made the best decision with the information I had with my specific symptoms.
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Jim Scott

  • Hero Member
  • *****
  • Posts: 7241
  • 1943-2020 Please keep Jim's family in your hearts
Re: I've made my decision.
« Reply #1 on: December 16, 2008, 08:58:03 am »
Tisha:

Congratulations on your arrival at a treatment & doctor decision.  I agree that this is one of the hardest parts of the 'AN journey' and of course, I'm very pleased to learn that this website, the forums and most importantly, the people who contribute to them have helped you get to this point with the confidence necessary to go forward with the positive attitude you clearly possess 

I trust your CK will proceed flawlessly and you'll be the beneficiary of an excellent outcome.  You deserve that and with the doctors you have, I think the odds are in your favor.  Thanks for the kind words regarding the AN patients/families that contributed to your support and added to your knowledge as you came to your treatment/doctor decision.  Now, please keep us updated.  We care.

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.

cindyj

  • Hero Member
  • *****
  • Posts: 1434
Re: I've made my decision.
« Reply #2 on: December 16, 2008, 12:50:48 pm »
Congratulations on making your decision, Tisha!  What a relief, right?  And from everything I've read, you are certainly going to a great place to have your CK done.  Now just relax and enjoy the holidays! 

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

goinbatty

  • Sr. Member
  • ****
  • Posts: 288
Re: I've made my decision.
« Reply #3 on: December 16, 2008, 02:13:03 pm »
Congrats!!  And don't you feel like a huge weight has been lifted off your shoulders.  I know I did.  Making that final decision is so difficult.  I wish you all the best and do keep us updated.
Sandra
1/2007 - 6 x 4.5 mm AN
8/2007 - 9 x 6 mm
CK at Georgetown 1/7/08-1/11/08; Dr. Gagnon
3/2008 - 10 x 7 mm
7/2008 - 9 x 10 x 6 mm (NECROTIC CENTER!!!!!)
5/2009 - no change/stable
4/2010 - 10 x 7 x 6 mm; stable/no change
5/2011 - 10 x 7; stable/no change
6/2012 - 8.1 x 7 mm
4/2014 - stable/no change

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: I've made my decision.
« Reply #4 on: December 16, 2008, 02:14:37 pm »
Tisha-
Congrats on making a decision - I know that is such a relief!  Now, try to enjoy the holidays and put this aside for a bit if you can.

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

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: I've made my decision.
« Reply #5 on: December 16, 2008, 09:53:18 pm »
Congratulations, Tisha  ;D

One of the hardest parts of your AN journey - making a treatment decision - is now over!!

IMO, the "gut" is the way to go.

Don't forget to put your treatment dates on the AN Calendar so we can all remember to wish you well.

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

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: I've made my decision.
« Reply #6 on: December 17, 2008, 01:19:23 am »
And I bet you, that down the road, we will see that 5 is better and that there will be studies that support that. 

Just for fun, I'll take that bet. A knit hat on the line, maybe?  :D

Congratulations on making the call. Your gut feeling will serve you well. I hope you have a smooth post-radiation experience next year (the treatment itself is easy). Meanwhile, have a great holiday season!

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.

msmaggie

  • Hero Member
  • *****
  • Posts: 665
  • Blessings abound!
Re: I've made my decision.
« Reply #7 on: December 17, 2008, 05:24:08 pm »


All right Tisha!  Now you can actually enjoy the time you have ahead of you.  The hardest part is done and you can quit marching in place!  Keep us posted on your upcoming plans.

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

rosewang

  • New Member
  • *
  • Posts: 6
Re: I've made my decision.
« Reply #8 on: December 17, 2008, 09:43:40 pm »
Congratulations Tisha! I'm at Stanford now getting my treatment and everyone (nurses, doctors, technicians, receptions) here has been world class. Palo Alto is really beautiful also as is the Stanford Hospital (I call it the Nordstrom of hospitals)  1 treatment down 2 to go. I'll be glad to be going home to LA on Friday to see my boy after the last treatment.

Rose

Tisha

  • Sr. Member
  • ****
  • Posts: 297
Re: I've made my decision.
« Reply #9 on: December 18, 2008, 05:01:07 am »
Rose,

You've been on my mind every day this week.  After everything is finished, I would really like to hear about your experience!  Good luck with the rest of the week.  Hugs,   

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

suboo73

  • Hero Member
  • *****
  • Posts: 639
Re: I've made my decision.
« Reply #10 on: December 18, 2008, 05:39:02 am »
Tisha,  I am so happy for you and your decision to go for Ck at Stanford!  Since i am just beginning this journey, i am reading with great interest your story and those considering or having already completed CK.  Please keep us updated on your progress, OK? 

[Rose - good luck with your treatments!  I am thinking of you.]

Our family just visited Yosemite this past Spring.  Since we flew into San Francisco, we stayed a few days to go sight-seeing in the city (cold in late May!)  But, we enjoyed the visit.  I like going to California, as long as the ground doesn't shake too hard beneath my feet, LOL!

Take care and peace during this holiday season.

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Tisha

  • Sr. Member
  • ****
  • Posts: 297
Re: I've made my decision.
« Reply #11 on: December 18, 2008, 08:37:06 am »
Sue,

I'm happy and comfortable that I've made this decision.  However, I still get moments of dread and fright imagining what if I'm the minority.  I mean...I was in the minority to even get an AN, what makes me think that I won't be the minority for it to not work as well.  I'm usually a pretty optimistic type of person, and as long as I don't dwell on the "what if's", then I do ok.  But I do have my moments.

I do have a certain sense of calm and peace now knowing where I'm headed.  It's nice to not have to research so frantically like before, feeling confused and overwhelmed.  This site and all of the wonderful people here have been the reason that I've been able to make up my mind this quickly.  It's only been less than 2 months since my diagnosis and I can hardly believe the decision has been made. 

I also felt overwhelmed at the thought that this was my decision alone.  I've not really made any important decisions in my life alone.  Always with my husband.  He's been with me every step of the way in this, helping me narrow down the best doctors, the best machines, the best statistics....but in the end I had to make the decision, he couldn't do it for me nor would I want to put him in that position.  My body, my hearing.  A very alone moment, indeed.  But surrounding by support at home and here.   

Good luck for you in your decision making process.  I"m also very anxious to hear Rose's experience!

Tisha

1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

suboo73

  • Hero Member
  • *****
  • Posts: 639
Re: I've made my decision.
« Reply #12 on: December 18, 2008, 09:56:38 am »
Tisha,

Thank you for your thoughts and words, then give me comfort and strength!  I say 'ditto' on what you said - i just a need to get on with the decision making at some point, trying not to rush it, but trying not to wait too long - what a guessing game!

Aren't we SO lucky to have the internet, this amazing group of people, and our family and friends to support us!?

My best to you and yours during this special season!

Take care.

Sue
suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

Omaschwannoma

  • Hero Member
  • *****
  • Posts: 777
  • Life is a journey, not a destination
Re: I've made my decision.
« Reply #13 on: December 18, 2008, 01:33:00 pm »
Tisha,

I know who will be having a wonderful Christmas--you.  Now the hard part is over and you will be able to enjoy your holiday, congratulations!  Sounds to me like you are more than half way there!  Good luck on your "day". 
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Tumbleweed

  • Hero Member
  • *****
  • Posts: 1052
Re: I've made my decision.
« Reply #14 on: December 18, 2008, 08:42:17 pm »
Hi, Tisha:

I think you've made an excellent decision. If I had it to do all over, I would still choose Dr. Chang and Stanford (and Dr. Gibbs as my RO). You'll be in the very best of care.

It's natural to worry about the outcome. Just tell yourself that worry isn't prescient or foretelling the future. It's just our mind playing games, like watching a horror movie. But the movie isn't real. With a track record like Stanford's and Dr. Chang's, the odds for great success are decidedly in your favor.

Please keep us informed. We'll all be praying for you and singing "'bye bye tumor" when you go for your treatment.

Sincerely,
Tumbleweed
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08