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Author Topic: Stanford 6 month Report  (Read 9039 times)

marystro

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Stanford 6 month Report
« on: March 16, 2007, 11:57:32 am »
Finally got a copy of the March 1 report from Stanford who sent to my previous ENT.  Mix up on my end for not changing the PCP (referral doctor) information in their system.  Here it is:

Good news:
No progression since CK.  Measured at 22 x 19 x 19 mm in February 6, 2007. The tumor does show evidence of central necrosis as evidenced by decreased contrast uptake within the center of the tumor.

Bad (but really not so bad) news:
Audiogram February 7, 2007 continues to show high-frequency hearing loss - slightly worse on the current audiogram compared to her prior study. Speech discrimination is currently 80% in the left ear with a speech reception threshold of 35 dB, compared to 92% with the speech reception threshold of 25 dB six months ago. This indicates a slight worsening in her audiogram.

Necrosis, necrosis - what a beautiful word!  Someone ought to make a song or poem out of it...  Happy dance and, Phyl, pop that champaign (again :D).  Flier58, shoegirl, Annie, Bev and others- stop chewing your nails!!!   ;)

Mary
« Last Edit: March 16, 2007, 12:05:21 pm by marystro »
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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

flier58

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Re: Stanford 6 month Report
« Reply #1 on: March 16, 2007, 12:03:09 pm »
Hi Mary,
This is a wonderful report (with the exception of hearing loss but I guess we are lucky that we had as much hearing preserved as we have).  Hurray for necrosis.  Ready to get my manicure (and pedicure).  Just a wonderful news.
Flier58
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ppearl214

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Re: Stanford 6 month Report
« Reply #2 on: March 16, 2007, 12:04:50 pm »
HECK YA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WOOHOO!!!!!!!!!!!!!!!

*does back-flip... falls on face!*   ;D

Mary, you rawk! Fab news!  When is your next hearing test for follow up?  At 6 mos, my hearing got slightly worse,  but at 10 months, I had improvement and my hope is that your's will also improve or maintain where it is... hang tough hun!

*runs off to fridge to grab bottle of chilled  Dom Perignon and champagne glasses for all to partake!*

xoxo
Phyl
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marystro

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Re: Stanford 6 month Report
« Reply #3 on: March 16, 2007, 01:29:47 pm »
Another 6 month MRI will be in order (doctor's order).  Hoping hearing improvement or stablized.  Meanwhile, enjoying my worsened hearing at times when I don't really want to hear (or pretend not hearing)  ;)

Yummy... Want that Dom Perignon... :P
« Last Edit: March 16, 2007, 01:31:28 pm by marystro »
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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

okiesandy

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Re: Stanford 6 month Report
« Reply #4 on: March 16, 2007, 03:10:46 pm »
Just you wait until that 1 year mark. Shrinking goes right along with necrosis. Yes, I think necrosis is a beautiful word.
Congratulations. Welcome to the NECROSIS side of the battle against the tumor. You need to post this on the CK site. You know how Dr M and Dr. S love those good results.

Sandy
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pearchica

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Re: Stanford 6 month Report
« Reply #5 on: March 17, 2007, 04:45:29 pm »
Nice Going Mary- yes our new favorite word is necrosis also!   ;)  That's wonderful news- thanks for checking in with us- Annie
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Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

BevM

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Re: Stanford 6 month Report
« Reply #6 on: March 17, 2007, 08:15:23 pm »
Hi Mary:  I have been wondering about you!!  So glad to "hear" (heh,heh,heh) necrosis!!!; I'm right behind you as you know (MRI scheduled for 4/18); just had my hearing tested again and like you I have reduced hearing and my "good" ear has more hearing loss. That's a little scrary.  I hope we will eventually have improvement.  I am wondering if the Docs gave you any more information and insight in to what,when to expect now/next? Are you experiencing balance problems and if so has that changed since treatment?

Thanks for the update and we'll keep thinking shrinkage!

Bev
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marystro

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Re: Stanford 6 month Report
« Reply #7 on: March 17, 2007, 08:37:58 pm »
The symptoms/side effects I have are:

Tinnitus - little louder and constant "e"
Nerve pain - very little occasionally (not as bad as before)
Hearing - little bit worse

Overall they are still mild relatively.  So, I should not be complaining at all.

No, I don't have any balance issue nor before CK nor headache.  Big fatigue has almost all gone away but it seems that I now need a little 10-15 minute "shut eyes" sometimes and I am good as new.

Bev - Did you have balance problems before CK?  What other symptoms do you have now?

Annie - What were your symptoms before and after CK?  Your AN is about the same size as mine.  Just curious.

Sandy - I posted my results on the CK site and also asked the good docs there about the hearing situation.  We'll see what they have to say about the hearing issue...

It's good to be back on the forum - life has been busy.  I think for some of us CK posties, life goes on...  Missed talking to you guys though.
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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

BevM

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Re: Stanford 6 month Report
« Reply #8 on: March 19, 2007, 08:19:15 am »
Hi Mary:   I had the same symtoms before and after treatment.  Balance. walking is a challenge, especially at night; however, it doesn't dramatically effect my driving, moderate hearing loss, VERY loud Tinnitus.  Ear pressure and pain; headaches which predate the AN.  This has all escalated since the treatment but I knew that was possible due to swelling of the tumor after treatment and I am  hopeful that it will improve over time.

Thanks for posting your progress and contacts with Stanford.  The most help right now is to follow those who have had treatment there just before me.

Best Wishes,

Bev
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marystro

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Re: Stanford 6 month Report
« Reply #9 on: March 19, 2007, 10:16:39 am »
The doctors from the CK board think that the worsening of hearing is probably caused by collateral damage to the nerve and small blood vessels supplying it.  They also doubt improvement of the damage over time.  Yikes!  But I also heard some of you, e.g. Phyl, have hearing improvement.  I wonder?
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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

pearchica

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Re: Stanford 6 month Report
« Reply #10 on: March 20, 2007, 10:41:26 pm »
I'm embarrassed but I have had little side effects from CK- No balance issues, some tinnitus  ( I think it must be moderate compared to everyone else) ( I finally looked up how to spell this word correctly) but no worse or better than before CK... I realize because I do so much driving that the back ground noise of the car really muted the tinnitus....

I'm only sad in that I have come off my State of Elation and now am back my "old impatient, why can't everyone else get their act together" Anne

Or pretty much back to normal.... :P

And yeah, I'm always the last of the team! hahah, I go for my first MRI in August..

Take care All- Annie
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Annie MMM MY Shwannoma (sung to the son My Sharona by the Knack-1979)
I have a TUMAH (Arnold Schwarzenegger accent) 2.4 x 2.2 x 1.9CM. CK Treatment 2/7-2/9/07, Stanford- Dr. Stephen Chang, Dr. Scott Soltys

Mark

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Re: Stanford 6 month Report
« Reply #11 on: March 21, 2007, 09:08:29 pm »
Hi Mary,

Super MRI report, definitely sounds like the little bugger is dying, and yes, necrosis is a good word  ;)

thoughts on the hearing loss:

Don't over react to one audiogram, the % difference from 80 to 92% SRT is I think two missed words out of 20 on the test. It is very possible to have that be different in the next test in 6 months ( just study harder  ;D). My pre-treatment test was 92% and I had a 88% the next one and then between 92-100% on the more recent ones. Point being slight variations may be caused for a variety of reasons and it's too early to say the 80% is definitive. If it does stay in the 80% range then it probably is collateral damage and won't come back, but it still is very much in the "usable" category and a much better result than the surgery probability was for your size AN and I think that is still very much worth celebrating  ;D

Mark
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November 2001

marystro

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Re: Stanford 6 month Report
« Reply #12 on: March 21, 2007, 10:53:53 pm »
I am not out of the woods yet.  Although may be just a small forest  ;)

The last 2 days, I experienced some intermittent shooting pains on my face (nose area to eye).  Those dreaded nerve pains again!!  Some of you may recall I had an episode of this pre-treatment for just a few days.  Went away for a long time.  I got scared and asked Dr Chang and his team about that last night in an email.  Dr Chang responded first thing this morning!!  Talk about incredible patient care!!!

Anyway, Dr Chang said this is likely caused by inflammation of the tumor when it is dying (he actually used the word "dying"!!! Amen!!) and that some patients had similar symptoms.  Nearly all went away on their own overtime.  My next MRI would shed more light and confirm if that's the case.  There are medication if I needed. (I think the medication will be steriods of some sort).

Since they are still tolerable, I am holding off on any medicine as long as possible.

Will keep you all posted.  Keep your fingers crossed for me please.  Now hearing is not as critical as these annoying pains... >:(

Mary
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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

Lorenzo

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Re: Stanford 6 month Report
« Reply #13 on: March 22, 2007, 12:59:49 am »
HI Mary,

Yes, I had those pains too, as well as the stabbing pains in my AN ear and right under the cheek bone. Didn't last too long fortunately and I don't get them at all now. Mine came on later than yours, after about 12 months. Apparently it was due to scar tissue forming around the tumour and some swelling, according to Dr Chang. At least I don't have that problem now!

Ciao, Lorenzo
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SuzeAN

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Re: Stanford 6 month Report
« Reply #14 on: March 24, 2007, 04:37:12 pm »
Mary that is GREAT NEWS!! I have been away from the boards for awhile now and it is awesome to come back and read great things!

Give me N..Give me E  Give me a C...........!!!!

My hearing is slightly off too and I am 1 1/2 year post CK, just getting used to asking people to repeat things if they are "low talkers" other than that nothing new to report. 

Let the Necrosis continue! (and the champagne)
Cheers,
Sue (Las Vegas)
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