Who has been in W&W for years with mild to no symptoms?

[Sharky]

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.

[mac84]

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

[Sharky]

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. 

[notaclone13]

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]

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.

[Sheryl]

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

[Sharky]

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.

[mvi]

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]

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.

[notaclone13]

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]

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. :-)

[Sharky]

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.

[Sharky]

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.

[wyhaines]

I wouldn't say that I have no symptoms. I have more or less complete deafness on my right side, and the balance information into my brain from that side is all garbage, but my brain has adapted, and I've been more or less symptom stable for nearly 6 years. The last MRI showed some growth, however, so that might be finally forcing my hand.


Kirk Haines

[judyl]

Compared to some of the other posters, I'm fairly new to the AN diagnosis. I've been W&W for a little over 2 years with no significant growth (1.4 cm). My only symptoms are mild to moderate single sided hearing loss, occasional loss of balance and positional vertigo, which I'm told is more related to a formerly diagnosed BPPV.  At my last visit, my doctor told me to follow up with him in 2 years with a MRI and hearing test. I am considering getting a hearing aid now though. 

Judy