Author Topic: Who has been in W&W for years with mild to no symptoms?  (Read 908 times)

Sharky

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Who has been in W&W for years with mild to no symptoms?
« on: July 31, 2019, 11:19:09 am »
I'm just curious. I'm in W&W (diagnosed in May '19) and my symptoms are very mild. If this is as bad as it would get, I could live with this.
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

mac84

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #1 on: August 01, 2019, 03:01:48 pm »
Sharky, I’m 5 years on the w/w in Oct of this year. Mine is 14mm or so....symptoms about the same with tinnitus being the worst. But I still run 20 miles a week and do all the things I used to do.

Went to 2 years between MRI so have my next one 4/2020
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 but hearing deteriorating - MRI 2 yrs
Fitted with Resound Linx 3D 5/18

Sharky

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #2 on: August 05, 2019, 07:15:55 pm »
Hi mac84 :-)

I'm just now seeing your comment. Thank you for the reply and congrats on five years W&W! That's fantastic.

May you continue to have more of the same.  :)
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

notaclone13

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #3 on: August 06, 2019, 08:32:59 am »
Hi Sharky,
From reading through forum posts for the past 1.5 years after my diagnosis, I can tell you that there are a significant number of people who have been on W&W for many years. But if their tumors are stable, they tend not to visit the forum very much. It may take a while for them to see and respond to your post. I was obsessed with reading posts for the first year after my diagnosis. But now, 1.5 years out, I may go for extended periods without visiting the forum. There is a thread about tips for people in the W&W period. That thread will acquaint you with posters in the W&W period and perhaps you can drop them a line via PM to see how they are doing.

Bee123

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #4 on: August 07, 2019, 07:41:10 pm »
Hi ,
I was W&W for 3 good years with no symptoms. Just had surgery on June 25 2019 as it grew double the size . Now recovering from surgery.
Sudden Hearing loss in left ear in 2/8/16
MRI Contrast :3/9/16
AN diagnosed : 3/14/16
Right now 11m*5mm*6mm
Mri 2017- no growth
Mri 2018--14*10*10
Mri 6 months 2019 18*14*11
Retrosigmoid At UCSD by Dr Rick Friedman & Dr Marc Schwartz .
Facial nerv saved , some hearing saved

Sheryl

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #5 on: August 16, 2019, 07:42:19 pm »
Okay - here I am an "oldie but goody".  After a bad headache in October, 2001, I went for an MRI.  It was difficult to tell whether the tumor was on the 8th or 9th cranial nerve so they called it an acoustic neuroma.  Yes, that was 18 years ago!!  I have had some minimal growth.  I now wear hearing aids which they say is "age related" and I have some instability/balance issues which could be caused by my knees (one replaced, one more to go).  On thick grass, soft sand, and bumpy surfaces I use one or two of my walking sticks. 

All of us are different and have to make the decision which is probably the worst part.  It's a miserable roller coaster ride but I'm glad I opted for W&W and actually, don't even think about it every day.  Derek is another long-term W&W, still trying to catch up to me!!  As one poster mentioned, stability tends to keep us oldies away from the board.

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

Sharky

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #6 on: August 20, 2019, 11:07:47 pm »
Thnak you so much, Bee123 and Sheryl! I'm just now seeing your posts. They give me hope.

Now that I'm past the initial shock, fear, avid researching, and obsessive forum-reading, I've pretty much accepted that I have this thing, and I'm not inclined to let it ruin my day. My symptoms are very mild and, like everyone, I hope they stay that way. If things start going downhill, I know that I'll travel to Vanderbilt for surgery, and then take things from there.
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

mvi

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #7 on: September 27, 2019, 01:05:16 pm »
Hello! I was diagnosed November 2018. 12mm acoustic neuroma. Initial symptom was facial palsy, from which I am completely recovered. Current symptoms are severe deafness and tinnitus. Recent 6 mo follow up MRI showed no growth! I plan to wait until I can't wait anymore! ;)

thelimeusa

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #8 on: October 16, 2019, 10:45:50 am »
I have had my w&w 1.3 cm tumor for over 25 years.  No growth mri every 3 years.  I always thought if I made it to 50 I would do radiation but now 55 and still waiting.
W&W for 25 years.  SSD left side.  MRI every 3 years.

notaclone13

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #9 on: October 16, 2019, 01:41:32 pm »
I thought I'd provide a link to an article that appeared in the Washington Post in 2016 about a lady who was in the W&W period for 10 years.   Very informative to those in W&W  and provides insight as to when to seek treatment.

https://www.washingtonpost.com/national/health-science/why-i-let-a-brain-tumor-go-untouched-for-10-years/2016/02/01/28b02d48-a5b6-11e5-ad3f-991ce3374e23_story.html?noredirect=on

Sharky

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #10 on: October 28, 2019, 06:48:58 pm »
Hi there!

I'm sorry for the delay in replying. I have not been on the forum for a short while.

Thank you for the link. I have read this and it gave me a lot of perspective. :-)
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

Sharky

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #11 on: October 28, 2019, 06:50:58 pm »
I have had my w&w 1.3 cm tumor for over 25 years.  No growth mri every 3 years.  I always thought if I made it to 50 I would do radiation but now 55 and still waiting.

Really? Wow. That is amazing and wonderful. :-) Thank you for sharing this.
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

Sharky

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Re: Who has been in W&W for years with mild to no symptoms?
« Reply #12 on: October 28, 2019, 06:53:53 pm »
Hello! I was diagnosed November 2018. 12mm acoustic neuroma. Initial symptom was facial palsy, from which I am completely recovered. Current symptoms are severe deafness and tinnitus. Recent 6 mo follow up MRI showed no growth! I plan to wait until I can't wait anymore! ;)

Hi mvi!
Congratulations on your recent MRI. :-) What good news.

I am with you. I will wait until there is a real sense of urgency for me. I'm much calmer now, five months post-diagnosis.
NF2 suspected--genetics assessment 08/2019
05/25/19 W&W until 11/26/19
05/20/19-AN found R ear via MRI--7mmx4mm

-fullness in R ear, minor balance issue, tinnitus, FATIGUE-

 


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