Author Topic: Mark's 12 year post CK status  (Read 2278 times)

Mark

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Mark's 12 year post CK status
« on: December 19, 2013, 02:08:57 pm »
Long time since I've surfed the forum, but as I committed back in 2001 when I was first treated by CK, wanted to post all my follow up results following my MRI and meeting with Dr. Chang yesterday.

I was happy to see Tumbleweed's post from last month recapping her successful 5 year update with Dr. Chang and am equally pleased to add my 12 year results ( hard to believe it has been that long  :o )

AN size - stable to slightly smaller than 2 years ago. currently at around 1.5-1.4 cm. Pre-treatment size was around 1.9-2 cm and, like tumbleweed, my reduced in size significantly in the first 18-24 months

Facial nerve function - no issues pre or post treatment

Balance - no issues pre or post treatment.

Hearing - Highly usable at time of treatment at around 85-90% SRT despite high frequency range loss, actually improved to 100% for the first few years after CK. Have not done an audiogram in the last 4 plus years, but subjectively would say it has degraded somewhat since. still usable but noisy places have become more challenging. Then again I'm also 12 years older  :)

Obviously , continue to be very thankful for the good outcome. Have been on a 2 year cycle and will be pushing out to 3 year , so next check up will be at 15 years

best to all

Mark
CK for a 2 cm AN with Dr. Chang/ Dr. Gibbs at Stanford
November 2001

Jim Scott

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Re: Mark's 12 year post CK status
« Reply #1 on: December 19, 2013, 04:55:57 pm »
Mark ~

Congratulations on your excellent 12-year update and thanks for sharing it with those who are most interested.

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.

sandyinwisconsin

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Re: Mark's 12 year post CK status
« Reply #2 on: January 05, 2014, 08:14:40 am »
Congradulations Mark,

I have 4 more treatments to go out of 26.  I hope I'm on here in 10 years saying the same thing.

So far, I have a little more ringing, but nothing else to report.

Sandy
1 cm AN deep in the boney canal.  Treated with 26 treatments of radiation in December, 2013.  Please pray with me that this worked.

leapyrtwins

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Re: Mark's 12 year post CK status
« Reply #3 on: January 06, 2014, 09:32:02 pm »
Congratulations, Mark!

Glad things are still going well for you - and just as glad that you returned to the Forum to report that  ;D

Best,

Jan

PS - I think Tumbleweed is male  ::)
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

Tumbleweed

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Re: Mark's 12 year post CK status
« Reply #4 on: January 11, 2014, 02:13:39 pm »

PS - I think Tumbleweed is male  ::)

Last time I checked, that was true! ;)

Thanks for the update, Mark! And congratulations on your lasting success.

btw, your word recognition score -- I believe this is what you were referring to, as you cited percentages -- can vary depending on the presentation level. Unless the presentation level (i.e., how loud the audiologist plays the recording of the words for you) is the same in all your audiograms, you're comparing apples to oranges. All other things being equal, a louder presentation level will result in a higher (better) word-recognition score. In plain English: if the words are played louder, they're easier to recognize. For this reason, I always note the presentation level that was used in my last audiogram and request the audiologist use the same level. That's the only way to tell with certainty whether my word recognition is actually improving or worsening.

Best wishes,
TW
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