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Author Topic: On my way to 10 years W&W  (Read 8078 times)

Sheryl

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On my way to 10 years W&W
« on: July 13, 2011, 08:10:04 pm »
Just an update.  Had my yearly MRI today at Brigham and Women's in Boston.  Doc felt it was unchanged from last year and, in the face of any overt symptoms, "I'll see you in a year".  I tried to convince him for a two-year followup, but he felt it was important to keep tabs just in case of a growth spurt.  So, looking forward to 10-year anniversary in November. 
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: On my way to 10 years W&W
« Reply #1 on: July 14, 2011, 02:57:50 am »
Hi Sheryl...

Many congrats 'Queen of the Watch & Wait Brigade' on your superb good news....10 years!!...awesome. With your hubby's permission, please accept my biggest possible cyber hug   ;D

Very Best 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: On my way to 10 years W&W
« Reply #2 on: July 14, 2011, 08:11:56 am »
Congrats Sheryl! Wishing you continued success into the future. A special bond within the regular bond of ANers. Keeping the faith.... Mickey
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Jackie

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Re: On my way to 10 years W&W
« Reply #3 on: July 14, 2011, 09:39:55 am »
Hello Sheryl,

May I also extend my congrats. for your nearing the 10-year mark! Wow, hoping to follow in your footsteps along with Derek and all the other Watch N Waiters!
It takes a special amount of "grit" to be on this journey, and We do share a very special bond! May all of our Blessings continue!!!
Jackie (4.5 years W and W)
« Last Edit: July 14, 2011, 10:14:43 am by 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???

Jim Scott

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  • 1943-2020 Please keep Jim's family in your hearts
Re: On my way to 10 years W&W
« Reply #4 on: July 14, 2011, 12:26:47 pm »
Sheryl ~

This is a wonderful update on your 'Watch-and-Wait' experience.  May all your future MRI scans be 'stable'. 

Jim
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4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

LisaP

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Re: On my way to 10 years W&W
« Reply #5 on: July 17, 2011, 12:56:39 pm »
Hi,

Wow and I mean Wow, I am into this trip for 3.5 years now, but 10.  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

skipg

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Re: On my way to 10 years W&W
« Reply #6 on: July 17, 2011, 04:42:06 pm »
Congrats Sheryl, I am just beginning my WW time. Hopefully I will be celebrating no growth anniversaries. One question.... did you change your diet/lifestyle after your diagnosis? I am very curious about our bodies sending healing nutrients to help control or reduce these tumors. Thanks and best wishes on your journey.
Skip
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Self diagnosed 11/17/2010 (love the internet)
MRI 12/2010 Official diagnosis 1/3/2011 RT AN 7x6x4mm's
MRI 6/17/2011 no change still 7X6X4
MRI 7/20/2012 growth spurt to 14mm
Aug 8th consult and decided on Proton Therapy
Proton Therapy @ Hampton Proton Institute,       done on 11/20/12

Sheryl

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Re: On my way to 10 years W&W
« Reply #7 on: July 17, 2011, 06:42:58 pm »
Hi Skip - no, I always have "good intentions" but have never really changed any habits.  I am finally committed (or maybe should be committed  :o) to losing weight via Weight Watchers so that is a more healthy lifestyle.

Thanks to all who wrote via this board and PM.  I've gotten to a point where I do not dwell on this on a daily basis, but I realize there are some who cannot tolerate W&W knowing that "something" that shouldn't be there is. 

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

Glenda

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Re: On my way to 10 years W&W
« Reply #8 on: July 20, 2011, 06:11:08 pm »
Hi Sheryl!

I have been in W&W for 3 1/2 years and mine has grown 3 1/2 mm in those 3 1/2 years, from 5 mm to 8.5 mm.  I have just been advised by Dr Brackmann at HEI to stay in W&W.  What is the size of yours?  My local ENT advised me to get something done as mine is growing but Dr Brackmann disagreed.  I think Dr Brackmann certainly has more experience  ;)  also are you having many symptoms?  Wow 10 years W&W is awesome.  Dr Brackmann said sometimes the AN will just stop growing....that would be awesome though it appears like yours is growing very slowly! Wonderful news!  Congrats to you!

Glenda
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Diagnosed 5 mm AN  Jan 2008
Deep in IAC
June 2010 7 mm
July 2011 8.5 mm
July 2012 1.1 cm
Nov 28, 2012 Mid Fossa Surgery Wake Forest Baptist Hospital-Winston-Salem NC, Dr John Wilson and Dr Eric Oliver


SSD tinnitus dizziness

Sheryl

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Re: On my way to 10 years W&W
« Reply #9 on: July 20, 2011, 08:14:28 pm »
Hi Glenda - Glad to hear you can stay in W&W.  My tumor was discovered incidentally after a bad headache.  The headache was found to be due to high blood pressure but guess what - you have a brain tumor!!  At the first MRI in November of 2001, it was measured at 9 mm, but after being reviewed by a neuroradiologist, he thought it may have been under-read but didn't give me a different size.  At my last MRI a week ago, it was the same size as the previous year which was read as 14 mm.  So, in 10 years we are talking about probably 5 mm of growth - some years there was no growth; others maybe 1 mm - still minimal for a ten-year period but, then again, still some growth.  Maybe, as Dr. Brackmann says, it will stop growing - I'd love that. 

Since my tumor is on the 9th cranial nerve it would affect my swallowing and gag reflex and those are fine.  I thought I was dizzy and unbalanced with some sharp pains once in awhile in the right ear but the neurosurgeon pointed out on my MRI how my tumor was definitely on the 9th cranial nerve and not close to the 8th (acoustic).

Good luck -
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

Silver Sonnet

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Re: On my way to 10 years W&W
« Reply #10 on: July 21, 2011, 11:56:32 am »
Yay--congratulations!  I especially love stories like this because, although I've had one AN removed, I still have another (about 4-5 mm) on the other side.  When Dr. Brachmann reviewed my MRI, he said he didn't think the small tumor would ever cause me any trouble.  I'm hoping he's right and I'll be in W&W myself for a LONG time :)
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Gus

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Re: On my way to 10 years W&W
« Reply #11 on: August 18, 2011, 02:08:45 pm »
Good for you! Hang in there!
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8x 16 mm AN on left side
Diagnosed September 2010
Wait and Watch until MRI showed 2 mm growth in July 2012
Surgery on Aug. 30, 2012 via middle fossa at MD Anderson; results showed the tumor to be a benign meningioma instead of a AC.  Hearing was saved; mild Tinnitus; Feel Very Blessed

chrisransom

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Re: On my way to 10 years W&W
« Reply #12 on: August 18, 2011, 02:17:54 pm »
Good news!  I hope to make the same post in 9 years!
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Diagnosed with 21x16x16 mm AN in December 2010.  No change in June 2011 nor in January 2012.  No major symptoms - tinnitus, some fullness in left ear but no hearing loss or other symptoms.
Firmly in the W&W camp for now.

Sheryl

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Re: On my way to 10 years W&W
« Reply #13 on: August 20, 2011, 06:04:58 pm »
Thanks again everyone.  Celebrating our 44th wedding anniversary today - hopefully the next 44 years won't go as quickly!!
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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

LisaM

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Re: On my way to 10 years W&W
« Reply #14 on: August 21, 2011, 09:05:10 pm »
Happy Anniversary Sheryl! 

...I'm in month 4 of wait and wait... hoping the months turn into years and then into decades and I follow the footsteps of the Queen of Wait and Watch!
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Wait & Watch
1st Symptom Temporary SHL 7/10 AN Diagnosed via MRI 4/14/11
AN Size 4/14/11 = 1.4cm x 1.8cm x 1.7cm
AN size 7/14/11 = Same - Stable, no growth
AN Size 2/01/12 = 1.3cm x 1.3cm x 1.6cm (5mm reduction)
AN Size 11/27/12 = less than a centimeter! (50% reduction! And I can still hear!)
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