Author Topic: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)  (Read 4505 times)

Mark

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Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« on: November 29, 2007, 12:58:33 am »
Since Lorenzo posted his great 3 year results following his visit to Stanford several weeks ago, I thought I would recap my follow up visit with Dr. Chang today.

My last MRI and audiogram were at the 4 year milestone, so it has been two years since my last check

AN Status - Still showing on the scan as "dead"  ;D and stable to slightly smaller in size. Current measurements are 1.8 x 1.6 x 1.6 vs. a size at treatment of approximately 2.1 x 1.9 x 1.8 . In terms of the cubic volume of the AN it is actually about 1/3 smaller.

Facial nerve Function - was 100% OK prior to treatment and is unchanged.

Hearing status - this is the one area where I got somewhat mixed results for the first time. Up to this point my hearing has been testing out as unchanged from what it was prior to treatment. I know everyone here has had many audiograms and I assume they have essentially the same elements which I call.

            Word recognition - ( repeat those 20-25 tricky words back  ;)) - scored 100% in the AN ear which is unchanged from the last 3-4 tests , so that was stable

            Signal transmission - ( measure the amount of sound transmitting from one ear and heard by the other) I think this is where the idea came about being able to look through one ear and see out the other side  ;D. At any rate, this was also stable and unchanged from previous tests.

            Frequency test - ( the famous push the button when your hear the beep test) . Most of us lose our high frequency recognition as a result of the AN and have a downward sloping graph. In my case 250 through 500 Hz are normal and then it starts sloping down from there and I hear 4K HZ at 50 db and 8K HZ at 60 db. These aspects of the graph were unchanged on this test but I did show a decrease of 15-20 db in the middle range ( 1k /2k Hz) from the previous audiograms.

Overall Dr. Chang felt the word recognition score was the most important area to focus on since that is what is most noticeable to us as patients. We discussed the slight frequency test drop as possibly being due to a testing variance  because of the stability of the other test elements. Subjectively, I would say that my hearing has not changed from pre-treatment levels.

At any rate, I would still grade the report as an A-. My next MRI will be 2 years from now in 2009 as is the norm. Dr. Chang and I did agree to do an audiogram only this time next year to see if the frequency hearing change was a testing aberration or an actual change

A couple of other tidbits that might be of interest:

Stanford has now done about 700 AN's with CK and had 5 failures ( slightly less than 1%).

The treatment protocols now have an added focus on limiting the dose to the cochlea to further improve hearing retention odds

It is being looked at as part of the next Stanford AN study due probably next year, but Dr. Chang feels there is a correlation between the level of pre-treatment hearing and retention after hearing. In other words, those with a high level of hearing coming into treatment seem to have less occurrence of post treatment deterioration than those who come in with marginal hearing to begin with.

Finally, I know many people on the board think Lorenzo sounds like a real nice guy. well, just in case anybody doubted that, Dr. Chang told me that when he was at Stanford for his check up he actually went over to the CK room and spent some time talking and reassuring some patients who were being treated that day. As Phyl says, Lorenzo you rawk  ;D

That's the update,

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

ppearl214

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #1 on: November 29, 2007, 06:37:29 am »
no, YOU rawk!  :-*   And now you see why you are not just my friend but my CK mentor in AN crime! :D  Congrats on a wonderful follow up.  You are the one I look up to during this CK-AN ride and it's updates like this, that you share with us, that helps to keep my mental strength going as I wait for my turn to have the same kind of results!  Thank you Mark for sharing this with us and continuing to share with us, not just your wisdom, but your experiences that help those of us, running up from behind, to keep our chins up while we wait for our results!

Great job, dude! :)

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

Dealy

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #2 on: November 29, 2007, 07:52:01 am »
GREAT NEWS MARK-But now I'm Jealous. I am coming up on my year and a half MRI since initial Radiation and feel that I have lost actually more hearing. Dang- I guess that's the price you pay when you are an NF2. Anyway-great news for you. You have been a wealth of info for all ANer's on this sight. You should have contacted Lorenzo when he was in California- (or did you)-you two could have had a great party. Thanks for sharing this news with all of us-Ron

candtlaw

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #3 on: November 29, 2007, 06:07:38 pm »
sounds like a good visit all in all :)  Thanks for sharing. Coming up on my 6 mo............
Cyndi
post CK for AN 1cm 04/30/07


Loving my life today :)

Jackie

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #4 on: November 29, 2007, 07:19:19 pm »
Hello Mark,

Much congrats to you and also to Lorenzo for the wonderful news and sharing your good news and experiences with us! I truly appreciate all of your time and help and knowledge that you have gained and openly shared with all of us! See, sometimes great things happen to really good people! May your Blessings continue!
Jackie
9mm x 11mm Right Side AN mild Tinnitis, and 60% hearing loss
Diagnosed 02/04/2007
Nov.13th, diagnosed with 5mm Meningioma
9/24/08 diagnosed with Aneurysm
Wait and watch per ENT's advice and researching my options!!! What's next???

Yvette

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #5 on: November 29, 2007, 09:20:30 pm »
Great to hear it!

Hey what do you mean 5 failures? Did they die?
3cm translab Jan. 2007 performed at Mayo Clinic MN. by Drs. Link and Driscoll. SSD but doing great!

Mark

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #6 on: November 29, 2007, 10:59:32 pm »
 ;D, no they didn't die. Failure in radiosurgery means the radiation didn't kill the tumor and there was continued growth. Stanford's experience is a little less than a 1% while the national average is in the 2-3% range. Same is true when there is regrowth after surgery which is closer to a 5-10% rate depending on the study you read and where you have it done.

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

leapyrtwins

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #7 on: November 30, 2007, 07:11:35 am »
Competition, competition, competition.  I'm raising twins, so that's something I've lived with on a daily basis for the last 11+ years LOL

Seriously, Mark, it's great to hear that your 6 year checkup turned out well.  Congratulations!

And as for Lorenzo, I totally agree, he does rawk!  What a great thing to do.

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

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #8 on: November 30, 2007, 07:55:56 pm »
Congratulations! That is so encouraging so some of us about to go trough it. I just spoke with Dr Chang today (over the phone) and have already seen 5 or 6 other various Dr's and am strongly considering him as "the one"! This forum and some of you more experienced guys who are still posting are a real blessing and have helped many out here who are just reading old threads! Here's hoping my insurance goes through!

If I may ask? If you where to have to do it again, knowing what you know now... would you do anything differently?
and the size of yours initially pre-CK in your original post, was that in CM?
                                     Thanks & CONGRATULATIONS Again, 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.

Mark

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #9 on: November 30, 2007, 08:33:15 pm »
Thanks to everyone for their congratulations and nice posts, I appreciate it  :D

Yenna, Yes, my AN measurements were in CM, I should have been more clear. Given I'm 6 years out with pretty solid evidence that the tumor is dead and my hearing and facial nerve function are essentially fine and unchanged from pre-treatment, I would absolutely make the same decision again. In my mind, having done the research I've done and read everyone's experiences here over the years, there is 0, nil, nada % probability that I would have gotten the same outcome for a 2 cm by choosing surgery with anyone , including HEI.

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

aardvark

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #10 on: November 30, 2007, 10:27:06 pm »
Mark -

I'll always be 4 years behind you (only 1 behind Lorenzo  ;) ) but we share the same team.  And I echo your assertion that it was absolutely The Right Choice.  Your 6-year update only reinforces my confidence. 

Cheers, and thank you for continuing to offer your input to the forum.  When I was first diagnosed, I found a lot of comfort in reading your story.

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

pearchica

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #11 on: December 05, 2007, 05:43:43 pm »
Nice results Mr. Mark- way to go- Annie
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

sgerrard

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #12 on: December 06, 2007, 11:20:56 pm »
It appears that I have neglected to post on this thread. So now I have.

I think you and Dr. Chang have overlooked the most obvious reason for your recent small hearing loss - you are getting old, man! 6 years? That's like totally ancient history. Who was president back then, anyway?   ;D

Nice to hear good long term results. Next milestone is when Chang says "follow up MRI in 5 years", or maybe "More MRIs? Nah, you're done."

Meanwhile, I'm still working on 6 months. 1 year at a time, I guess...

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.

Lorenzo

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #13 on: December 08, 2007, 10:18:29 am »
HI Mark,

Well done you oldy!  SIX years!! Good going. I wish I'll be like that by then.

Ok, the nice guy bit. I met ToneControl, but it wasn't just me, Gennysmom was there too, and my wife. Not taking all the credit for that one.

Nice guy... tse...

Ciao, Lorenzo  :)
CK, Stanford, Drs Chang and Hancock, Dec 04,
doing great now.

marystro

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Re: Just so I can "trump" Lorenzo - 6 YEAR CK check up :-)
« Reply #14 on: December 31, 2007, 01:15:49 pm »
* See what I missed for not having been on the board for a while!  ;)

Congratulations both to you and Lorenzo !!!  You both rawk !   ;D

I am coming up with my 1-1/2 year check up since CK in February.  The Stanford team is awesome.  They keep me physically prepared through this ordeal but it's you and others who have gone before me that your experience and re-assurance keep me mentally sane and sound.

You are not getting older, Mark (and Lorenzo too).  You are getting wiser.  :D

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