Watch and Wait > For those in the 'watch and wait' status

First consult today - watch and wait? Sudden hearing loss, anyone?

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life_is_beautiful:
Hi, everyone. You all seem like a fantastic supportive group, from what I have read, and I am thinking of attending the Chicago conference - so I might meet some of you!  :)
I am 31 years old and I just discussed my MRI result with my ENT at the University of Chicago today. I have a small 6.5 mm AN which is in a "lateral" location in the canal and had recent symptoms (sudden hearing loss/tinnitus/possible facial numbness) which resolved completely with steroids. Latest audiometry back to normal (initially high-frequency loss and absent AEPs). She suggested watch and wait, and when I am ready for treatment (unclear when that might be) choices are MCF surgery or radiation.

- Has anyone else, like me, had temporary sudden hearing loss/tinnitus that went away completely with medications only? I feel very fortunate, but I  want to know if the symptoms might come back anytime soon! ENT admits she just does not know!  ??? *modified 6/9 because I asked this in a more confusing way before*
- I read some evidence that even if the tumor doesn't grow, you still might lose hearing - and observing the tumor may result in more hearing loss especially if it grows. Did anyone get expert advice AGAINST watch and wait - if so, who and what did they say?
- Generally, do you get the impression that getting earlier treatment may be the best chance at preserve hearing long term, or should I W+W and just enjoy my hearing while I have it? I am a musician with many decades ahead, so long term is most important to me.
- I am unclear how often I should get *MRI and *audiometry to follow up for W+W but she said young people's ANs tend to grow faster. When did you all get your first follow-up MRI? How often after that? How often audiometry?

I'm sure I will have many more questions to come, but thanks for sharing your experiences...

suboo73:
Hi Life is Beautiful!  - WELCOME!  (But sorry you had to join this crazy AN club!)
You are so right - FANTASTIC FOLKS here and i am still learning lots after 8 months or so.

It seems to me that most folks go into treatment and the symptoms they have going in, like tinnitus, do not necessarily get 'better.' 
[But read on - there are exceptions to every rule!]

Anyway, i am in W & W mode, and my sister is too, diagnosed 6 months prior to me (see signature). 
I was misdiagnosed for at least 12 years - so i was LONG into W & W and didn't know it!  My hearing has declined, but not rapidly. (Maybe 40% decline now?) Hearing loss and 'fullness' in the ear are my main symptoms.  My AN is a little bigger than yours, but still considered 'small.'  My ENT at Unv. of VA suggested i 'do' something when the AN reaches the 1.5 cm size, if it ever gets there.  Since i have basically had no change in 6 months, i continue W & W for now.  Keep in mind that part of the concern is not necessarily the size, but the AN location and how it is pressing on which nerves.  "Small but mighty' is a phrase you will sometimes see around here.

Yes, i would like to keep some of my hearing too, being a former musician.  And, with a smaller AN, i would prefer to not have surgery.
But, being a little older than you (53!) i also consider things like my general health and insurance coverage.  My choice today would be CK at Stanford.
We have CK on the East Coast, but lets just say i would prefer Stanford if i have the chance.  No guarantees on ANY treatment, that is part of this crazy journey!

I am sure you will receive comments from some fellow musicians, as well as all the other fine folks here on the FORUM!
All my best to you in your AN journey!  Keep asking questions, this is a SUPER-DUPER place!  ;D

Sue

PS.  Most AN patients seem to have MRIs at 6 month intervals unless other symptoms develop.  I had seen 2 local ENTs and they told me i was losing my hearing because i was getting 'older.'  OK  - you may like your ENT, but PLEASE seek those professionals with AN experience.  I believe this is VERY important.  What would i have done, if my sister had not had a VERY ASTUTE ENT?  After her diagnosis, i simply went to a major med. ctr., explained my story and ASKED for the MRI.  Thank goodness, my ENT said yes! 

Jim Scott:
Life is Beautiful - nice sentiment and a lovely screen name.  Welcome!  :)

Your AN is quite small and very likely treatable with radiation, if you chose it.  I won't attempt to answer all your very relevant questions but others will, I'm sure. Observation ('Watch-and-Wait) is certainly a valid course to pursue.  Your realization that, being a musician, preserving your hearing is critical to you is sensible and may be a motivation to address your AN sooner rather than later.  I would seriously consider another MRI scan in six months, no more that that, based on the possibility that your AN could grow larger in that time and make your choices harder.  Of course, I wish you the best and hope this website and these forums can continue to be of service to you.  :)

Jim

Vivian B.:
Hi Life Is Beautiful,

Welcome to the forum and sorry you had to find us. I am not sure if I can answer any of your questions as I am also on Watch and Wait. I have 30% hearing loss and 49% balance loss of balance nerve. From what I understand, the hearing and the balance deteriorate with or without treatment. With radiation, some hearing may be preseverved if they don't fry the hearing nerve depending on location. With surgery, I was told personally that hearing cannot be preserved as most of the time the hearing nerve is cut during the procedure. All in all, ANs are benign and treatable even though we may lose our hearing. Like everything else, we adjust over time. I would definitely follow through with thre recommended MRIs as you want to determine the rate of growth. Hope everything goes well. Keep us posted.

Vivian

life_is_beautiful:
Thanks to those who shared their experiences and knowledge so far - it really feels better to know that I am not alone in facing this challenge.

I changed the wording of one of my questions because it was confusing - I had symptoms that already went away with steroids and I am very fortunate that now my hearing is normal again (confirmed with audiometry) - off of steroids for two weeks now.  I'm curious if anyone experienced this too and if/when the symptoms came back. It sounds like once the symptoms are there, it is unlikely for them to get better in most cases.

Sounds like every 6 months is standard for the MRI. Do people get their hearing tested regularly too?

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