Author Topic: 18 months post CK  (Read 4846 times)

marystro

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18 months post CK
« on: February 16, 2008, 10:52:42 am »
Glad to report that my 18-month post CK checkup shows stability - no change - still waiting for Stanford's official review - I just sent reports to last week.

MRI measurement by tech - 2.1 x 1.6 (in my opinion, it looks smaller :))
Hearing - the same (hi frequency severe, mid freq mild to severe, low freq normal)

No more nerve pain, tinnitus same loudness, other than that life is good!

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

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Re: 18 months post CK
« Reply #1 on: February 16, 2008, 11:41:12 am »
*runs in... gives Mary BIG OLE' SMOOCHIE!!!!!!!  :-*  :-*  :-*  *

I am SO thrilled with this news!!!!!!!!  I'm right there with ya.......... 22 months and you and I are on track!!!!!

Congrats, congrats hun! I know it's not been an easy ride for your but your "best coast" cheerleader is leading the hoo-rahs! :)

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

sgerrard

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Re: 18 months post CK
« Reply #2 on: February 16, 2008, 03:38:27 pm »
Nice, always glad to hear about a successful CK. I can't wait to join this club.  8)

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.

candtlaw

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Re: 18 months post CK
« Reply #3 on: February 16, 2008, 05:43:45 pm »
Congrats Mary :) 
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

Lorenzo

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Re: 18 months post CK
« Reply #4 on: February 18, 2008, 11:46:57 pm »
Brilliant! great news Mary!!  :)
Ciao, Lorenzo
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

goinbatty

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Re: 18 months post CK
« Reply #5 on: February 23, 2008, 05:42:54 pm »
Great to hear things are going well. 
I'm probably going to repeat the MRI in April.  The doc said 2-3 months so might as well wait til then.  I can tell something's going on in there.  Tinnitus is louder and hearing is somewhat diminished.  Also that mild clicking sound happens more frequently.  I just think of it as morse code these days.  Or since I view this tumor as an alien in my head, I've taken to view that as ET calling home.....
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

shoegirl

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Re: 18 months post CK
« Reply #6 on: February 25, 2008, 05:46:15 pm »
Congratulations Mary!  Glad you are doing well!  :)
left side 2.0cm x 1.3cm  
Cyberknife - 12/2005
The Barrow Institute, Phoenix, AZ

marystro

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Re: 18 months post CK
« Reply #7 on: March 08, 2008, 12:30:19 am »
I finally received the official report from Dr. Chang (I called and they fax'ed immediately  ;)).

  • Official tumor measures 19 x 15 x 20 mm stable to smaller than treatment measure
  • Recent audiogram reveals worsening hearing since treatment but stable over past year

Dr. Chang is very pleased with the results.  I am particularly pleased that he is recommending another MRI and audiogram in one year's time!!  Yeah... I am promoted from 6 month follow up to 1 year !!!

Definitely time to celebrate and been thinking of all my friends here in the forum.  If not because of your support and thoughtfulness, I would not have lasted.  I still remember the first week when I found out about my tumor.  I thought I was going to die...  And from crying non stop for 2 days to within 2 days, Mark put me at ease.  Phyl and Lorenzo shared their experience, Sue, Shoegirl, and so many others that I am so grateful for.  And there are the doctors on the CK board!!  How can anyone forget them.  You helped me through my treatment options, pre-treatment prep, post-treatment symptoms and when I was confused, scared and anxious.  You always lend me your ears and hearts.  This is such a great family of people who truly care.  An exclusive club that has no match.  You are helping me through my journey. 

Like many it is hard to leave our family.  You all have a special place in my heart.  I will continue slip in and wave hello to you, share my experience and update from time to time.  I hope and pray that the future is just as good as all my heroes before me.  I thank God for sending all you angels to me!!! 

Mary
Mary
July 2006 - 22 x 18 x 20 mm
August 2006 - CK at Stanford by Dr. Chang/Dr. Soltys
February 2008 - 19 x 15 x 20 mm and stable
May 2009 - 17 x 14 x 18 mm

ppearl214

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Re: 18 months post CK
« Reply #8 on: March 08, 2008, 08:21:21 am »
Mary.... what do I say?  :-*  Congrats, congrats to you!!!!!!! I am SO thrilled to hear another AN'er (and CK'er) doing fab!!!!!!!!!  Another success story and sending you MAJOR huggles for continued wellness.

From the "best coast" to one of my fave parts of this country (btw, PapaPearl will be there shortly at the Coronado... told him to have a drink on the beach for me!).... MAJOR congrats to you!

oxoxoxoxo
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

nancyann

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Re: 18 months post CK
« Reply #9 on: March 08, 2008, 09:26:14 am »
Mary:  Congratulations on the great news & outcome.    I'm very happy for you;  time to celebrate!!

Always good thoughts, Nancy
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