Top Tips For The 'Watch & Wait' Brigade!

[waldo1308]

Derek, I’ve been reading your updates about long-term watch and wait and would appreciate hearing how you’re doing.

Are you still watching and waiting? Have you had another MRI since your June 2024 update? How have your hearing, balance, and overall quality of life been?

I’d also welcome updates from anyone who has followed observation for many years. If you eventually chose treatment, what prompted that decision—tumor growth, changes in hearing or other symptoms, or something else?

Your experiences would help me understand the long-term picture. Thank you for sharing.

[donjehle]

Derek doesn't read the ANA forums on a regular basis, but he usually posts a few times a year.  So, please be patient, waldo1308.  I'm sure Derek will eventually respond to your questions.  It just may be a while.

[waldo1308]

Thank you Don!

[donjehle]

Hi, waldo1308!

Let me just say that next month will be five years since my AN was diagnosed.  It still remains small, and I'm not experiencing any new symptoms.  So, at this point, watching and waiting is the best protocol for me.  Unless my AN grows larger or my symptoms become worse, I will probably continue to wait patiently.  It took a while, but I'm getting used to it.

[keithmac]

 Hi anyone potentially interested in my (now) long-term experience.
I first realised something was wrong November 2013 when I was camped in Arizona, a snowbird and RVer at that time.
Tinnitus was slight at first but soon became very noticeable, traffic roar when walking was deafening and unsettling, driving my 3.5 ton dually a challenge, walking in a straight line even more so.
Reluctant to visit ER (I’m a Brit) I persevered through the winter and by April I’d learned to cope with my symptoms.  But my balance was awful and I couldn’t run or even walk in a straight line unless I looked down at my feet most of the time. Hiking the desert needed concentration. 
I did, though, get used to the situation and only in 2015, when my hearing suddenly became bad, was my AN diagnosed.  From research I already suspected that’s what I had though – it wasn’t a surprise.
I did fear in fall 2015 that I’d need treatment - I had read accounts on ANA and also BANA.  But I didn’t and year-on-year since then my tumor has remained around 14mm, about half an inch, measured at annual MRI scans. Over the years since I’ve gotten more used to my symptoms and some have even become much less noticeable.  I’ve been lucky but I’ve read loads of accounts from others less so.
With little to contribute I pulled away from ANA but I remain a member of BANA, the Brit. acoustic neuroma association.  I found experiences there are more relevant for me and things in the US can look very different.
Nonetheless a tumor is a tumor wherever we live and I hope my experience may encourage sufferers beginning their own acoustic neuroma journeys. I really do hope their experiences will be no more difficult than my own.

[donjehle]

Thank you, keithmac, for sharing your experience.  Even though our experiences are all different, there is encouragement for others in sharing what we ourselves have gone through.  Your story is a special one.

[waldo1308]

Thank you, Don and Keith, for taking the time to share your updates.

Don, I appreciate hearing how you’re doing nearly five years after diagnosis and how you’ve become more comfortable with watching and waiting.

Keith, thank you for sharing your experience from the first symptoms through diagnosis and the years since. Hearing that your tumor has remained around 14 mm and that some symptoms have become less noticeable is encouraging.

I understand everyone’s experience is different, but your stories give me valuable perspective as I learn more. I appreciate the support from both of you.

[keithmac]

"Keith, thank you for sharing your experience from the first symptoms through diagnosis and the years since. Hearing that your tumor has remained around 14 mm and that some symptoms have become less noticeable is encouraging." 

It's a fine balance between encouraging fellow sufferers to remain positive and being unrealistic about how often tumors do not grow significantly.  I have often wondered what percentage of diagnosed tumors do not grow and/or do not create problems.
In my first few years I was resigned to the likelihood of needing surgery and I studied all I could find along with engaging with others about their experiences.  I always hoped my tumor wouldn't become a problem but never actually expected it.  I have been fortunate but for so many sufferers an acoustic neuroma is life altering.  I have read many accounts where folk have been severely affected and hearing about their experiences I find very upsetting.   
Beyond being diagnosed you Americans potentially face navigating your healthcare system with its often financially-crippling costs.  I've experienced the best and worst of it a couple times and I feel for anyone who does not have good healthcare cover.
   Unrelated to any of the above I'm finding this website very unresponsive and slow.  I hope the likely-huge database won't cause bigger problems in time.