Author Topic: So Far, So Good  (Read 10478 times)

ANGuy

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So Far, So Good
« on: January 27, 2016, 04:04:51 pm »
Had an MRI yesterday and hearing test.  Both showed no change from previous tests 6 months ago.  Doc says I can now get scanned and tested annually instead of semi-anually! :)
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.

Derek

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Re: So Far, So Good
« Reply #1 on: January 27, 2016, 04:15:01 pm »
Hi there ANGuy...

Congrats on your great news and very best wishes for a never ending journey on the 'watch & wait'  route ;)

Regards

Derek
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

Doc

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Re: So Far, So Good
« Reply #2 on: January 27, 2016, 06:06:45 pm »
Your insurance company is going to send your Doctor a nice bouquet flowers. He just saved them a bundle  ::)
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

mcrue

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Re: So Far, So Good
« Reply #3 on: January 28, 2016, 04:59:15 am »
That is fantastic news. Glad to read your hearing is stable. I had to get off the train last month.
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

MG

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Re: So Far, So Good
« Reply #4 on: January 28, 2016, 06:40:03 am »
ANGuy, Great news! I just had mine on the 26th but have  not seen the doctor yet. Will know next week if it shows growth. Keep going like you are!

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

ANGuy

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Re: So Far, So Good
« Reply #5 on: January 28, 2016, 03:55:04 pm »
Your insurance company is going to send your Doctor a nice bouquet flowers. He just saved them a bundle  ::)

It's so true.  My Dr is at Duke in Durham and I am in Charlotte.  My ins co wants me to get the MRI locally here because it is cheaper.  Duke wants me to get it at Duke.  The ins makes me verify verbally each time that I am refusing to get it done locally and then they will pay for Duke to do it.  They are basically trying to talk me into doing it their way.
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.

ANGuy

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Re: So Far, So Good
« Reply #6 on: January 28, 2016, 04:47:17 pm »
ANGuy, Great news! I just had mine on the 26th but have  not seen the doctor yet. Will know next week if it shows growth. Keep going like you are!

MG :)

Thanks for the kind words, all of you.  As for keep on going with the status quo, I'm doing my best ;D
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.

mac84

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Re: So Far, So Good
« Reply #7 on: January 31, 2016, 03:52:52 pm »
I'll add my congrats also since I'm also on the W/W. I've gone to 1 yr intervals and my 1 yr comes up on 4/18/16 at Vanderbilt. I'll ride it as long as I can!
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: So Far, So Good
« Reply #8 on: January 31, 2016, 07:31:23 pm »
I'll add my congrats also since I'm also on the W/W. I've gone to 1 yr intervals and my 1 yr comes up on 4/18/16 at Vanderbilt. I'll ride it as long as I can!

Judging by your signature, our circumstances aren't that different.  Good luck and let us know how your MRI goes.
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.

mac84

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Re: So Far, So Good
« Reply #9 on: February 01, 2016, 12:55:16 pm »
AN, you're right.....I'm 50 in August of this year and figure if I can keep watching and waiting things can only get better w/ medical advancements and the possibility of any secondary cancer risk after a GK or CK.

I still run 20 miles a week and do whatever I need to. Hardest thing is living w/ the diminished hearing and the high pitched Tinnitus. Otherwise, I could go on like this for quite some time!

Good luck everyone....
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: So Far, So Good
« Reply #10 on: February 01, 2016, 04:11:02 pm »
AN, you're right.....I'm 50 in August of this year and figure if I can keep watching and waiting things can only get better w/ medical advancements and the possibility of any secondary cancer risk after a GK or CK.

I still run 20 miles a week and do whatever I need to. Hardest thing is living w/ the diminished hearing and the high pitched Tinnitus. Otherwise, I could go on like this for quite some time!

Good luck everyone....

I just quit dipping Copenhagen after using it everyday for 30 years and am back in the gym for the last 6 months having lost 10#.  I went out and bought new pants because my 34's come unbuttoned with all of the extra material bunched up when I tighten my belt.  Had to get a new belt too.  I haven't had a drink in 8.5 years and feel like a million Dollars, although that cliche' might be up to a billion by now.  I'm in the middle of my mid-life crisis and have no interest in getting my head cut open.

My hearing is actually pretty good.  Both ears have high frequency loss with my AN ear being more profound.  I have had tinnitus my whole life, although it's worse now, and I never could understand conversations from many people since they mumble.  And yes, they do mumble.  I have no problem understanding the audiologist or news anchors or anyone else with a clear speaking voice.
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.

mac84

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Re: So Far, So Good
« Reply #11 on: February 02, 2016, 08:24:27 am »
AN, Keep up the good work!!!  We'll hang in as long as we can!

I too have ZERO interest in undergoing such a long surgery with the risks involved. I'll take my chances w/ GK once that time is obviously here.

"If you're doing all you can, what else can you do"?   :)
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

PaulW

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Re: So Far, So Good
« Reply #12 on: February 02, 2016, 01:48:58 pm »
Quote
My hearing is actually pretty good.  Both ears have high frequency loss with my AN ear being more profound.  I have had tinnitus my whole life, although it's worse now, and I never could understand conversations from many people since they mumble.  And yes, they do mumble.

I have one ear that understands everybody, and one ear that has trouble with people mumbling.
High frequency hearing loss is the main cause of mumbling syndrome.
I have normal hearing in low to mid range, and moderate hearing loss in the high frequencies in my AN ear. A hearing aid made mumblers understandable again, and even helped in noisy bars restaurants, etc.. I was actually quite surprised how well it worked. Sometimes for a laugh I put my hearing aid in my good ear and crank up the volume to max.... Best spy tool ever... Can hear all the conversations in the office, even the ones 50ft away behind a partition. If you ever had an ambition of becoming bionic... Or watched the $6m dollar man as a child.. Get yourself a hearing aid they are awesome..
« Last Edit: February 02, 2016, 01:57:50 pm by PaulW »
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

ANGuy

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Re: So Far, So Good
« Reply #13 on: February 02, 2016, 04:03:11 pm »
No doubt if my frequency range was intact I could understand speech better and I agree that an aid would help.  If I made my living listening to people I would definitely get one now.  I drive a truck.  When I talk on the phone with my bluetooth, I can heat fine even when the ear piece is in my bad ear.  I have maybe 5 minutes worth of face to face conversation a day outside of my family and I can manage things at this point.

As for family, they can speak up or be ignored.  I understand plenty of people just fine.  My kids need to learn to speak clearly as it is a life skill they will need when older and if my wife doesn't want to bother, then I am not going to miss whatever she is mumbling about.  I understand my mother in law with her thick accent and soft voice because she speaks clearly.  In a world where I have to pass up all of the good parking spaces (handicapped), endure endless appeals for my money to "find a cure" for everyone elses' affliction, where I have to be the only one in the world to refuse to wear pink for breast cancer since NOBODY gives a tinker's darn about prostate cancer, I figure all I am asking is that people move their lips and aim their pie whole in my direction IF they want me to listen to them.

I know too many people who have spent a fortune on hearing aids and stopped wearing them that with my minimal loss (at this point), I am not going to get them.  It's not vanity, it's not the cost, it's the maintenance and the apparent annoying way they transmit the frequencies that you can hear fine already.  They are like contact lenses.  For people with thick lenses, they are a huge improvement.  For me, with my 20-40 vision, they were more trouble than they were worth.
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: So Far, So Good
« Reply #14 on: February 06, 2016, 07:27:55 pm »
Great news - keep it up!!  I'm up to 14-1/2 years W&W.  Next MRI in June and hoping that a new, occasional "echoing" feeling in both ears and rare ache in right ear are due to allergies and drippy nose.

Can't let Derek get ahead of me!!

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