Author Topic: Its been 5 years and still watching!  (Read 6555 times)

westcoastroller

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Its been 5 years and still watching!
« on: October 05, 2015, 04:17:02 pm »
Hi its been a couple of years since I have posted on here.  I have been going for my yearly MRI's and my AN remains the same size.   Bonus!  I have been doing great, I have lost most of my speach recognition in my AN ear but other than that my life has been going well.  I don't focus on whats not working and try and make the best with what I have.   I have run a couple of 15km races and did the swim portion of a triathlon relay race. I am on a healthy nutritional food system that gives me lots of energy.  I just retired from my job a month ago and now I exercise 1-2 hours a day. My next MRI is in January, hope I still have no change.
1.3 cm rs diagnosed Feb 23, 2012

ANGuy

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Re: Its been 5 years and still watching!
« Reply #1 on: October 05, 2015, 04:43:54 pm »
I'm with ya brother (sister?)!  I'm 1.5 years with no change and I'm sure, with 20/20 hindsight, that I have had it much longer than that.  Mine is about the same size as yours and I too am going to see how long I can put off treatment.
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.

keithmac

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Re: Its been 5 years and still watching!
« Reply #2 on: October 07, 2015, 12:38:47 pm »
Goes for me too.

 2.5 years since diagnosis, problem symptoms since late 2008, presumably started growing before then because occasional 'odd' but transient symptoms were noticed but not seen as significant.  Wonder how many have similar early symptoms?  :-\

 No discernible change since first MRI in 2013.  Still running and traveling thankfully.  Fingers crossed now for a future with no further deterioration....   :)

MG

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Re: Its been 5 years and still watching!
« Reply #3 on: January 06, 2016, 03:09:35 pm »
Hi! I am going on 3years W&W and am getting next MRI on the 19th. I am just not ready to take the plunge into the unknown, meaning GK or CK. Wish me 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

mcrue

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Re: Its been 5 years and still watching!
« Reply #4 on: January 10, 2016, 06:17:27 am »
Good luck MG!
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

westcoastroller

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Re: Its been 5 years and still watching!
« Reply #5 on: March 12, 2016, 07:43:49 pm »
I had my follow up MRI last week.  I have some good news and some what the ?? news.   Good news the AN remains the same no new growth, the bad news the MRI showed flair spots.   My ENT didn't notify me of the results he had my GP, my GP said it could be nothing but I now have to wait to see a neurologist for more tests. 

Has anyone else had flair spots show up on MRI?
1.3 cm rs diagnosed Feb 23, 2012

ANGuy

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Re: Its been 5 years and still watching!
« Reply #6 on: March 13, 2016, 08:58:24 am »
I had my follow up MRI last week.  I have some good news and some what the ?? news.   Good news the AN remains the same no new growth, the bad news the MRI showed flair spots.   My ENT didn't notify me of the results he had my GP, my GP said it could be nothing but I now have to wait to see a neurologist for more tests. 

Has anyone else had flair spots show up on MRI?

I haven't heard that term.  Maybe PaulW would know what it means?  I have heard of scattered ischemic activity.  That is a series of broken blood vessels that are basically tiny little strokes.  It sounds terrible but it is something that pretty much all middle age people have, they just don't get MRI's and therefore never know about it.  It is not related to the AN.
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.

westcoastroller

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Re: Its been 5 years and still watching!
« Reply #7 on: March 13, 2016, 02:39:20 pm »
I was told the flair spots are not related to the AN, its something else and my GP said it could be nothing but he's sending me to a neurologist.  Probably for more tests.   I just really hate waiting and not knowing. 
1.3 cm rs diagnosed Feb 23, 2012