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Author Topic: How long have you been W & W  (Read 11665 times)

Raven

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How long have you been W & W
« on: November 14, 2009, 09:18:41 am »
Hi everyone,

The reason I'm asking this is I got an MRI last week and saw my Dr. yesterday. Very good report as there was no new growth and still have 90% word recognition, in his words, everything is stable. Next MRI is in one year rather then the usual six months. If I didn't loose my hearing on the left side I may not have ever known I had a AN on the right side. I guess you could go a long time not knowing you have a AN, but in our cases we know we have one. So, my question is......how long have you been waiting and watching?

For me it has been since July '07..........Hopfully I can wait & watch forever

John
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7/10/07 hearing gone in left ear overnight
7/25/07 diagnosed with bilateral acoustic neuromas - aka NF2
11/7/07 left side tumor removal via middle fossa - 12 hrs.
11/15/07 right side decompression via middle fossa - 8 hrs.
Dr. Eisenman - University of Maryland Medical Center

Mickey

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Re: How long have you been W & W
« Reply #1 on: November 14, 2009, 10:39:16 am »
Hi John! Ive officially be W+W going into my third year, Yearly MRIs now the last one "stable" as the first one with diognosis. I really couldn`t estimate how long I may have had this but my symptoms started with tinnitus 30 years ago.  My symptoms are relitively minor till today (.12x.06). I intend to stay as healthy as possible with no intervention unless necessary. Keeping the faith, Mickey
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Jackie

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Re: How long have you been W & W
« Reply #2 on: November 14, 2009, 11:44:50 am »
Hi John,

I have been in the Watch and Wait mode since Feb. 2007. Had MRI's every six months (unfortunately finding other intruders) until last July, all three are stable so, will wait this time a full year for the next MRI/MRA. Still continue to research but the Anuerysm is the priority for now. My symptoms remain the same from the beginning, hearing loss, Tinnitis and fullness. Life is good and am praying it remains this way!

Jackie
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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???

Derek

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Re: How long have you been W & W
« Reply #3 on: November 14, 2009, 12:09:47 pm »
Hello there John...

I am now approaching my 8th year in the 'watch and wait' mode and I believe that I am one of the 'longest serving' W & W on this Forum. If you have not already done so, can I refer you to the thread 'Top Tips For The Watch & Wait Brigade' which I initiated and which is currently languishing towards the bottom of page 2 of this sub forum with amost 10,000 views to date You will find lots of interesting tips and info there which hopefuly you will find of interest and use to you. I did ask moderator Phyl many months ago if she could possibly make that thread a 'sticky' for ease of reference but nothing has transpired.

Regards

Derek
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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.

Mickey

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Re: How long have you been W & W
« Reply #4 on: November 15, 2009, 10:52:15 am »
Hi Derek! If I remember correctly your AN has reduced in size over the past 8 W+W years? Thanks, Mickey
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Derek

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Re: How long have you been W & W
« Reply #5 on: November 15, 2009, 03:28:31 pm »
Hi Mickey...

Yes, you are correct...started off upon diagnosis in 2002 at 2.5cm and my last MRI scan in May of this year indicted a dimension of 1.5cm. Even allowing for differentials in MRI equipment and neuroradiology interpretations etc over the intervening years, any reduction rather than an increase is good news and I remain of positive mindset that 'IT' has indeed reduced by 1cm and will continue to do so without the need for treatment intervention.

My daily lifestyle, diet and exercise regime as chronicled in the thread 'Top Tips For The Watch and Wait Brigade' remain constant and thankfully, there has been no change in my symptoms. I am now at the stage where many days can pass without my even thinking about 'IT' and long may that situaton continue!

Regards

Derek


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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.

Mickey

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Re: How long have you been W & W
« Reply #6 on: November 15, 2009, 04:52:01 pm »
Just wanted to make sure. Very inspirational. You know my story + following your footsteps. Best Wishes, Mickey
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opp2

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Re: How long have you been W & W
« Reply #7 on: November 15, 2009, 05:56:20 pm »
Consciously since September. I was booked for surgery twice, and canceled twice for various reasons.

The only worsening of symptoms I've had is with my whooshing/pounding/twinkling head. I am working very hard at making a few lifestyle changes to see if that helps.
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Diagn Apr 14 2009 with 2.5 cm lt AN. - numbness in the face and sudden onset headaches accompanied by balance issues. Consults with Drs in S Ontario, California (House) and Vancouver. Picked Dr. Akagami in BC.
Retrosigmoid July 6, 2010, 3.0cm by then. SSD left, no other significant side effects.

Sheryl

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Re: How long have you been W & W
« Reply #8 on: November 15, 2009, 08:22:14 pm »
Hey Derek and others - I'm still here too waiting and watching since November of 2001 so just hit my 8th year!!  I have graduated to MRI's every two years and have one coming up in a few weeks.  Don't feel any symptoms so am hoping for stability or maybe even decrease.  I think there is someone doing W&W even longer than myself.  Although mine's not on the 8th cranial nerve, it is on the 9th so I feel "related" to you all - benign, same type of tumor, etc. 

I'll make a note to update after MRI,
Sheryl
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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

Derek

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Re: How long have you been W & W
« Reply #9 on: November 16, 2009, 04:46:22 am »
Hi there Sheryl...

Good to know that you are still going strong in the W & W league!...As a matter of interest, does anyone know who in this 'familly' has been diagnosed for the longest period and is still in W & W without having had any treatment intervention?

Regards

Derek
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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.

Vivian B.

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Re: How long have you been W & W
« Reply #10 on: November 16, 2009, 05:45:51 pm »
Hi Raven,

I have been on W & W since March 2009, longest 8 months of my life. I continue until next May 09 on W & W, but after that I think I will get this thing fried.

Vivian
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CPA AN(most likely meningioma) 1.6cm by 1.5cm by 1.9cm diagnosed early March 09. Watch and Wait.

poppyy

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  • I have a 1.6 cm sized Neuroma diagonosed in 2008
Re: How long have you been W & W
« Reply #11 on: November 17, 2009, 10:49:18 am »
Hi,

   My name is Paulette , I have been diagonosed in 2008 , I go to Mass Ete and Ear , just had my second 6 month MRI yesterday and it showed no growth , sono I go once a year
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suboo73

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Re: How long have you been W & W
« Reply #12 on: November 24, 2009, 07:57:06 am »
Hi John!  Congratulations on the MRI results, sounds great!

I have been here 'officially' for just over one year.
But i can tell you that i have had hearing loss and fullness feeling in my ear since mid-1990s.
Since my local ENTs were clueless, i was crazy enough to believe this was a sign of 'getting older' - at 40?!!!!!

Anyway - i am grateful for my sister, who had a very rapid diagnosis last year and prompted me to seek evaluation by an expert.
Even then, my audiogram was rather inconclusive, so i had to ASK for the MRI. [be careful what you ask for.]
I believe knowledge is power, so am grateful for my sister, the original MRI, and the ability to hopefully make my own treatment decisions, if necessary.
Nothing is perfect in this human world - just trying to be informed.

Best wishes on your continued W & W status!
For now, i am there with you.
Sincerely,
Sue
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suboo73
Little sister to Bigsister!
9mm X 6mm X 5mm
Misdiagnosed 12+ years?
Diagnosed Sept. 2008/MRI 4/09/MRI 12/09/MRI 1/21/11
Continued W & W

LisaP

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Re: How long have you been W & W
« Reply #13 on: December 02, 2009, 06:19:57 am »
Hi Derek,


I have been W&W since March 31, 2008.  My last MRI was on October 21, 2009 which showed no growth.  Hope get through another year!!

Best wishes,

LisaP ;D
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LisaP
AN at 12mm by 7mm by 7mm,  shown no growth as of September 26, 2013, 5.5 years into this journey.  Next MRI 2015. Doctors: Mason and McKenna.  Continue to W&W

Derek

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Re: How long have you been W & W
« Reply #14 on: December 02, 2009, 02:46:43 pm »
Hi there Lisa...

Congrats on your recent MRI scan results...great news and keep up your positive outlook!

Regards

Derek
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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.
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