Author Topic: Still Stable - Watch and Wait going on 7 years  (Read 1589 times)

GaleWynne

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Still Stable - Watch and Wait going on 7 years
« on: March 19, 2018, 10:54:31 am »
My August 2017 MRI showed my AN to be stable, no growth, barely 2MM.  My next MRI will be August 2019.  I'm lucky, for the most part I have been able to put my AN diagnosis out of my mind since my symptoms diminished since my initial diagnosis in 2011.  I posted to give others encouragement. I also recently had a hearing test and my hearing is still normal. 
Sister 3MM surgically removed Nov 2001 due to disabling balance symptoms.
Tinnitus Jan 2011. MRI April 2011  almost 2MM AN.  Symptoms increased June 2011; MRI over 2MM AN July 2011. July 2012 MRI: AN now 2 MM which ties to symptom decline. July 2013 MRI: barely 2MM Aug 2015: STABLE Aug 2017: STABLE

ANSydney

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #1 on: March 19, 2018, 04:22:46 pm »
Gale, that's great news. Good to see someone who has moved on, come back to make a reassuring post.

notaclone13

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #2 on: May 04, 2018, 06:46:27 am »
Gale, thanks for posting your recent MRI results. It helps to read posts from people in W&W that have had no growth for extended periods of time. It is a source of encouragement for the rest of us in this category.

kestes

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #3 on: May 07, 2018, 09:42:27 am »
Such great news!  Very exciting for you.  What size was your AN when first diagnosed and you have no symptoms at all?  Thank you!  Wish you continued success on W&W! 
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
Next MRI May 2018
Columbia, South Carolina

GaleWynne

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #4 on: May 09, 2018, 07:08:40 pm »
I had tinnitus start up in my right ear in Jan 2011.  That was my only symptom that I was aware of at that time. The doctor did an MRI to rule out any structural problems...but that is what found the barely 2MM AN.  My sister had a 3MM (that's right MM, smaller than CM) removed back in 2001 the AN had messed her up pretty bad, she was in that rarest category of having disabling balance symptoms with no hearing loss.  I began having vision and some balance issues in 2011 and the AN had gone to be slightly over 2MM. But then it started receding a bit back to under 2MM.  I don't know how to explain any of it really.  However, I was having a lot of issues at the time with my vision, patterns would move on me, I had problems going to the grocery store with the lights and patterns. I started declining dental xrays (that said, gum and teeth health are very important so recently I did have bitwings done).  I started getting massages and using some essential oils.  I have no idea how the thing receded and is now stable and I'm pleased to say that overall my vision is fine and my balance is fine. My MRIs are done in the strongest machine they have here in Central Illinois -3T machine, I can't remember, the same person has been reading my results for years now.  I wrote some other posts in 2011 when I was having more problems. I also admit I have anxiety too so that can always magnify things, but I also know I wasn't completely overreacting,  I was definitely having issues.  I also must admit that I now have a job where I work from home so I don't do some of the things as much as I used to - I was driving over an hour for my commute before.  So I have wondered at times if perhaps I don't have as much stimulation as I did before.  I do pace myself and try not to overcommit. I'm a recovering Type A workaholic so I have to remind myself to be balanced.  At least that is the one thing the AN did - it helped bring more balance into my life.  I was very fatigued in 2011, having started a new job in Sept 2010 and was trying to prove myself, however, I think the fatigue was more from struggling with the vision issues and to some extent balance issues (a bit of a sway feeling at times, I started wearing very sensible shoes). 
Sister 3MM surgically removed Nov 2001 due to disabling balance symptoms.
Tinnitus Jan 2011. MRI April 2011  almost 2MM AN.  Symptoms increased June 2011; MRI over 2MM AN July 2011. July 2012 MRI: AN now 2 MM which ties to symptom decline. July 2013 MRI: barely 2MM Aug 2015: STABLE Aug 2017: STABLE

PurrfectHappiness

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #5 on: June 28, 2018, 10:25:34 am »
GayleWynne:

That is fantastic and encouraging news!  Very happy for you!  :)

Thank you for sharing your news.

I was recently diagnosed 3 mos ago with a 9x5x5mm in left ear.  I am hopeful in “W&W” mode and remaining positive and strong.

I suffer from tinnitus, off balanceness, and fatigue but am managing well.

~Kind Regards to all

Neversat

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #6 on: July 06, 2018, 04:07:51 pm »
Diagnosed Nov17 with 3x4mm lesion. Just had 3rd MRI with no growth. Did you get contrast with the T3 MRI. All MRI’s with contrast in last 7 months and am really not a fan. Doctor says have to have contrast to see tumor that small. Glad to here you have had no growth in 7 yrs. Take care

KristenWS

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #7 on: July 17, 2018, 09:49:33 am »
That is wonderful news.  How do you manage symptoms with watch and wait.  I have just been diagnosed with 1 cm AN.  My symptoms are horrific.  Dizzy, balance, fatigue, clogged ear feeling, ringing in the ears.  I have first otologist appointment this week but so anxious (and my anxiety gives me AN like symptoms - bad cycle) and I just want to feel like myself again.  Congrats to you!
Symptoms started 6/24/18
First MRI 7/12/18, 1cm AN

jsteph

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #8 on: August 19, 2018, 06:27:50 pm »
Kristin, sorry that you are having such difficult symptoms.

I've had an AN for over 3 years now and am watching and waiting. I too have had difficult symptoms over the whole time .  I have nearly complete hearing loss on my AN side, fatigue, intermittent eye pain blurriness, and neck and shoulder muscle ache that ebbs and flows throughout the day and night making it hard to sleep and feel rested. It's the Pitts but I have gotten used to it somewhat. I also have balance problems though this is one symptom that has improved some over the years. I had difficulty walking straight during the first year or two. I'd walk with friends or family and I'd constantly bump people next to me! Now I don't have as much trouble though I don't walk the way I used to.  I don't have the wonky sensation as much as I did before.

There is hope for watcher/waiters. My An hasn't grown over 1 1/2 years now.
Rt. side AN diagnosis 2-2015: 15 x 10 x 10 mm
MRI 9-2015:  16 x 11 x 11 mm
MRI 11-2016: 19 x 13 x 13 mm
MRI 4-2018: 19 x 12 x 14
Watching & Waiting

ryankohler

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #9 on: August 26, 2018, 05:00:59 pm »
Hello All!
I was diagnosed in 2013. My little tumor is 2mm and has been stable for 5 years. SSD, dizziness, and tinnitus cause me grief everyday, but at this moment I am not willing to take the risks associated with treatments. I love to read the experiences of others as each one of you battle the issues with w & w, surgery and other treatments. I’ve been very frustrated as of late with my ssd and tinnitus. Trying to find that happy place during the day AND night. Kiddos to all of you battling this annoying critter!

notaclone13

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #10 on: August 28, 2018, 07:38:52 am »
Welcome Ryan, and so sorry to hear such a tiny AN is giving you so much trouble. It’s amazing that they can even see a 2 mm tumor on an MRI.  Glad that you found this site as it is full of nice people that share an unusual and annoying health problem. We all learn from each other’s experiences and share the knowledge we have gained.

Ellen K

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Re: Still Stable - Watch and Wait going on 7 years
« Reply #11 on: October 01, 2018, 03:35:41 pm »
I also had only 2mm, dx 2010, now grown to 3mm. Ive had so much trouble with dizziness, balance, fogginess, but stable hearing.  It is so weird that such tiny tumors can cause so many problems.
3mm diagnosed December 2010 when I was 45. Very unusual presentation - severe vertigo, then dizziness daily, now just occasional dizziness, but it can be debilitating some days. No hearing loss! But yes to ear fullness and wonky brain. Watch and wait.

 


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