Author Topic: No Growth  (Read 7928 times)

ANGuy

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No Growth
« on: July 28, 2015, 06:23:53 pm »
I just got back from Duke for followup MRI, hearing test, and consult with Dr. Kaylie.  When Dr. Kaylie walked in, he had three trainees (interns?) and his nurse with him.  So five of them walk in and I say "you guys look like you aren't going to let me leave".  When I was on the job and and WE entered an interview room room like that, you can bet the dude wasn't leaving lol.

No, he said, everything is unchanged, hearing and MRI same as last time, so unless I had any questions, there wasn't much to say.  So, for anyone trying to keep score, I had sporadic symptoms starting in  '06 or so.  About 15 months or so ago I had sudden hearing loss that resulted in me going to an ENT and subsequent MRI showing 1cm tumor.  The hearing quickly recovered on it's own to what it probably was before the sudden drop and I would rate that as "good" (not great mind you, but functional and any loss is not noticeable to me other than through a hearing test).  Two followup MRI's have shown no growth, so my WW continues for as long as I can ride it out. 

Next MRI and hearing test is scheduled for 6 months unless there is a sudden change in symptoms.  If that shows no change, he will schedule me for 12 months between MRI's.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Janey

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Re: No Growth
« Reply #1 on: July 28, 2015, 09:58:01 pm »
Congratulations on the good report!

mcrue

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Re: No Growth
« Reply #2 on: July 29, 2015, 01:17:01 am »
Awesome! My ENT claims if it doesnt grow within the first 5 or 6 years then it will likely never grow, but these AN's are unpredictable, hence the reason for the lifetime MRI's.

Congrats on your good news!
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

ppearl214

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Re: No Growth
« Reply #3 on: July 29, 2015, 04:58:12 am »
Congrats on the good news.  Wishes for continued wellness.

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

MG

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Re: No Growth
« Reply #4 on: July 29, 2015, 06:02:32 am »
Awesome news ANGuy! I hope you can continue on your W&W train.

Good luck,
MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

mac84

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Re: No Growth
« Reply #5 on: July 29, 2015, 06:16:38 am »
Fantastic!  Hope all continues as it has.....
Diagnosed 10/13/14 with 1.4cm AN L side
1st Consult with Vanderbilt 11//14
W/W.  Next MRI in April 2015 at Vanderbilt.
April 2015 MRI no growth -
April 2016 MRI no growth - still 1.46cm.
4/17: No growth!
4/18: No growth! MRI 2 yrs
4/20: No growth! Symptoms stable- MRI 2 yrs

ANGuy

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Re: No Growth
« Reply #6 on: July 29, 2015, 06:32:47 am »
Thanks for the kind thoughts!
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

CHD63

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Re: No Growth
« Reply #7 on: July 29, 2015, 06:39:10 am »
ANGuy .....

Congratulations on the stable report ..... always what we like to hear!

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

NYLady

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Re: No Growth
« Reply #8 on: July 29, 2015, 07:12:42 am »
That is great AN Guy!

Always get anxious around MRI time and when the news is good, the relief is fantastic!  Wishing you continued stable reports.  Best to you.

NYL

mcrue

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Re: No Growth
« Reply #9 on: August 01, 2015, 10:39:35 am »
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

ANGuy

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Re: No Growth
« Reply #10 on: August 01, 2015, 01:37:12 pm »

http://acoustic-neuroma.info/wandw

I think that page is a good, concise, summation of what WW should be.  I am approaching all of this exactly as that page recommends, but I couldn't describe it so succinctly.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Sheryl

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Re: No Growth
« Reply #11 on: August 01, 2015, 08:48:14 pm »
Wonderful news ANGuy - keep chasing me - I'm almost at year 14!!!
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

MG

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Re: No Growth
« Reply #12 on: August 08, 2015, 07:00:50 am »
Good article ANGuy. Thanks for sharing.

MG
Resides Inverness, Fl.
Diagnosed w/ AN tumor Aug 2013  9x5x6mm
 2016  1.3 CM Touching Brain Stem 
'Wait and Watch' is over. w/ symptons of tinnitus along w/ ear pain and pressure most every day. Will be having Cyber Knife in June 2016

leapyrtwins

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Re: No Growth
« Reply #13 on: August 09, 2015, 11:02:26 am »
It's always wonderful to hear great news!

Congratulations!   ;D

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