Author Topic: Off to see the wizard...  (Read 6295 times)

yenna

  • New Member
  • *
  • Posts: 8
Off to see the wizard...
« on: January 09, 2008, 09:15:49 pm »
I Hope the wonderful wizard "Chang" (of Stanford). I'm scheduled for CK the week of 1/14! (Leaving Tampa 1/12) Any last minute words of advice? Kinda nervous & just hoping for the best...any prayers or good wishes are appreciated. I'll keep you posted on the experience, Linda :)
2.5cm left AN diag. 8/2/07, w/ possible Pseudo Tumor Cerebri or Hydrocephalus
(balance nerves gone, aprox, 30% hearing loss, AN resting on brain stem)
CK 1/16/07, Stanford, Chang & Gibbs.

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: Off to see the wizard...
« Reply #1 on: January 09, 2008, 09:37:12 pm »
Linda -

I had surgery, so I can't give you any words of wisdom regarding CK, I just wanted to say good luck.

My thoughts and prayers are with you.  Let us know how it turns out.

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

yenna

  • New Member
  • *
  • Posts: 8
Re: Off to see the wizard...
« Reply #2 on: January 09, 2008, 09:45:18 pm »
Thank you Jan :)
2.5cm left AN diag. 8/2/07, w/ possible Pseudo Tumor Cerebri or Hydrocephalus
(balance nerves gone, aprox, 30% hearing loss, AN resting on brain stem)
CK 1/16/07, Stanford, Chang & Gibbs.

OMG16

  • Sr. Member
  • ****
  • Posts: 342
Re: Off to see the wizard...
« Reply #3 on: January 09, 2008, 10:18:38 pm »
I can not help you with the radiation aspect either.  We were not even offered this treatment option, but I wanted to wish you well and have a safe trip.  Kiss to your forehead.  16
I believe you are given choices in life and it is not what has happened to you that defines who you are.  It is how you handle the situation and finding the positive in an almost hopeless situation that counts the most.  My son is my hero and I have had the pleasure of learning this from him.

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: Off to see the wizard...
« Reply #4 on: January 09, 2008, 10:26:23 pm »
Sorry Linda - I'll be no help either, but I can say good luck and we'll be thinking about you and praying for you!  Try not to be too nervous.  We look forward to hearing from you!  Have a safe trip!!   ;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.

nancyann

  • Hero Member
  • *****
  • Posts: 2251
  • carpe diem
Re: Off to see the wizard...
« Reply #5 on: January 09, 2008, 10:31:28 pm »
Linda:  Having gone thru surgery & facial paralysis, I thing you've made a GREAT DECISION !!!  Others who've gone to Dr. Chang had great results.
          You obviously did your homework & are in the best of hands.
          Always good thoughts,   Nancy


Hey lori67:  you little Italian you,  I KNEW there was something I liked about you,  my mom's side is from Naples & my dad's side is from Bari (the crazy side.. lol..).  There are quite a # of Italian decents on this forum, & I can't help but wonder if there is something in the genes somewhere......
« Last Edit: January 09, 2008, 10:39:34 pm by nancyann »
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

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: Off to see the wizard...
« Reply #6 on: January 10, 2008, 12:03:40 am »
Hi Linda,

For some reason, I think you must be really smart and handsome for having made that decision. Oh wait, I mean beautiful.  :D

Chang and company are a great team, you are in good hands there. When I was going I got advice like "have coffee at such and such a place" or "have a fractionated margarita at such and such bar." It is actually pretty easy to go through, Larry and Eileen, the techs, will make you feel right at home - well almost, except for the giant cyclops head that keeps looming over you. The time away from the hospital seemed pretty normal to me.

There are a couple of computer terminals on the main floor, upstairs from the treatment room, so you can get a snack and drop in on the forum after every treatment to give us the play by play. Have a great trip!

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.

aardvark

  • New Member
  • *
  • Posts: 39
Re: Off to see the wizard...
« Reply #7 on: January 10, 2008, 12:12:17 am »
Linda -

The Great and Glorious Chang is everything you'd ever want in a wizard.  You'll like him.  You'll like his staff.  You'll be dazzled by the procedure itself, and before you know it, you'll be back here writing your own rave reviews.

Have a good flight!

Adrienne
1.5cm X 1.0cm Left Side AN  Dx 8/05
CK at Stanford 9/05   Drs. Chang & Gibbs

lori67

  • Hero Member
  • *****
  • Posts: 3113
Re: Off to see the wizard...
« Reply #8 on: January 10, 2008, 08:53:27 am »
Any doctor who knows where to get the good coffee and margaritas must be good!  As long as he doesn't have too many of either before work!!   :D

Nancy, I didn't realize there seemed to be a trend here...interesting.  Maybe we can get someone to pay us to do research on that.  I wouldn't mind going to Italy for a little while...  My Grandfather was from Sicily (talk about crazy) and my Grandmother was from Milan.  My Mom is Irish, so I think she kept the Italian in us in check.  ha ha.

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.

jb

  • Full Member
  • ***
  • Posts: 136
    • My MRI sequence:
Re: Off to see the wizard...
« Reply #9 on: January 10, 2008, 12:29:25 pm »
Linda,
Good luck with your treatments.  I'm sure you'll do great.  I think waiting is the worst part of the whole thing, because the treatments are really pretty uneventful.  Just lay on the table and listen to music - you could take some CD's if you have some favorites.  If you're still nervous they can probably give you an Ativan or something similar.  Let us know how it goes.

JB
2 cm right-side AN, diagnosed July 2006
Cyberknife at Georgetown Univ. Hospital, Aug 2007
Swelled to 2.5 cm and darkened thru center on latest MRI's, Dec 2007 and Mar 2008
Shrinking! back to 2 cm, Aug 2008
Still shrinking (a little), I think about 1.7 cm now, Aug 2009

okiesandy

  • Sr. Member
  • ****
  • Posts: 273
Re: Off to see the wizard...
« Reply #10 on: January 10, 2008, 12:41:30 pm »
Thought they had CK in Tampa. I didn't go to Dr. Chang, I went to Medbery in OKC. Just had my 2 year MRI and the AN is smaller, has necrosis. Love that word. I sometimes feel guilty that the CK is so easy. The only thing I would change is to have had treatment sooner. Waiting was more stressful than the treatment. I went shopping with my daughter everyday after treatment. A co-workers husband went to work every day after his CK treatment and then went on a cruise the next week.

Good Luck and positive thoughts.

Sandy
Cyberknife 1/2006
Clinton Medbery III & Mary K. Gumerlock
St Anthony's Hospital
Oklahoma City, OK
Name of Tumor: Ivan (may he rest in peace)

Sheryl

  • Sr. Member
  • ****
  • Posts: 460
Re: Off to see the wizard...
« Reply #11 on: January 10, 2008, 08:56:28 pm »
CK units are all over Florida but not in Tampa - One in Naples, Orlando, Miami, Palm Beach (Dr. Spunberg), and a few others.  We are not too far from Tampa in the Fort Myers area but ended up in Boston at the Beth Israel for my husband on 10/1/07.  We do get to spend summers up on Cape Cod and are originally from "Bean Town" so the choice was easy for us.  Chang and Stanford (from what I hear) are tops!!  Good luck - keep us posted.
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

yenna

  • New Member
  • *
  • Posts: 8
Re: Off to see the wizard...
« Reply #12 on: January 10, 2008, 08:59:10 pm »
Wow, you guys are good... 16 thanks for the kiss & Nancy thank you for the great decision comment, it's taken quite awhile to get here. Steve, I'll take smart & beautiful! I want to know where the fractionated margarita is?, as I'm a margarita conessuer!  Adrienne, you just made me want to go find some ruby slippers to start clicking! Thank you all for the great thoughts & responses... More after I return from from Kansas/oops! I mean California.  still nervous, but better, Linda :)
2.5cm left AN diag. 8/2/07, w/ possible Pseudo Tumor Cerebri or Hydrocephalus
(balance nerves gone, aprox, 30% hearing loss, AN resting on brain stem)
CK 1/16/07, Stanford, Chang & Gibbs.

candtlaw

  • Jr. Member
  • **
  • Posts: 78
Re: Off to see the wizard...
« Reply #13 on: January 11, 2008, 01:34:41 pm »
gl............ I hope that all goes well. Had my CK in Ft Wayne In....... Dr Apple/Dr Munz....... do let us know how you are
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

yenna

  • New Member
  • *
  • Posts: 8
Re: Off to see the wizard...
« Reply #14 on: January 21, 2008, 11:35:14 pm »
Hey guys, I made it to the other side...I am so glad to have that part of the process behind me :) The stress of having to make the right decision was really weighing. Now for the opening of the "wait & see" book.

The process was really just like you've all said here. There were really only a few minor surprises (my own expectations) one was that Chang & Gibbs were only seen on the first of the 5 days I was in & out. Not at all after the 3 treatments. The CK physically is a bit intimidating when it right over you (I have 2 sons and they watch guy movies ie: Robo-cop, Alien, Jurassic Park) and the frame of mind I needed to be in is that it is really trying to kill "the tumor". So don't think about Velosoraptors (one of the assistants mentioned this to my husband as we were going in the first time!) No, I didn't take any drugs and after the initial time and knowing what to expect it was a piece of cake!

I had my last treatment Friday and had nausea Sunday, ok today. Not sure exactly what's ahead....but hoping for the best! Yenna
2.5cm left AN diag. 8/2/07, w/ possible Pseudo Tumor Cerebri or Hydrocephalus
(balance nerves gone, aprox, 30% hearing loss, AN resting on brain stem)
CK 1/16/07, Stanford, Chang & Gibbs.