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

[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! 

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?

[ppearl214]

great profile name!

Hello and welcome! Hoping to meet you at the ANA Symposium in Chicago... I'll be there....

I have heard of steroids and even antihistimines (ie: Benedryl, etc) that have helped with sudden hearing loss, but not sure since you haven't had treatment yet on your AN.  I only experienced short term hearing loss, but after my radiation treatment, which, like you, resolved after a short course of steroids.. and 3 yrs later, my hearing is the same.

Again, welcome!
Phyl

[Keeping Up]

Hi and welcome

I had just left a long post - and it disappeared.

MRIs - I have been told by my medical team - 6 month follow-up, if no growth, then 12 months.  I have negotiated 8 mnths.  I am in public health care with long queues so that also might make a difference.

Hearing preservation - I haven't been given positive views on hearing preservation from the ENT, the neurosurgeon or the GK radiation oncologist.  Hearing loss will continue to deteriorate in W&W (I have a 10 year study on the conservative mgmt of ANs - mild hearing loss over the period, in particular for intracanicular tumors - if you want it, send me a PM with your email address).  Surgery - 50% preservation.  GK - on average, not likely to keep useful hearing beyond 10-15 years was my understanding - but that can be challenged by other studies.  (No CK in Canada - so not applicable).  Hearing preservation isn't my priority - I want to avoid treatment if possible despite the risk to hearing (the least of my worries).  I am an accountant so hearing may not be as valuable to me as to a musician.

Good luck and welcome (again).

Ann

[mk]

Hello and welcome.

I experienced sudden hearing loss twice. Once a couple of months after my diagnosis and once 6 months after receiving GK treatment (which is a form of radiosurgery).  Basically I went from full hearing to total loss of word recognition and about 60% loss over the entire frequency range overnight in the first case and suddenly in the second. I also had severe tinnitus at the same time. It all went away after about two weeks, following a very strong dose of prednisone (steroid). I haven't had another episode since and my hearing is almost back to its previous levels.

Although sudden hearing loss is not very common, it does occur. Gradual loss is more common with ANs, and is due to the slow destruction of the nerve. This is irreversible and may happen even if the tumor doesn't grow. However sudden hearing loss may be due to swelling (tumor induced edema), which slows down the flow of blood to the nerve. Steroids reduce the inflammation, therefore if taken soon enough blood flow is restored and hearing may come back. And as your doctor said, unfortunately there is no guarantee that it won't happen again, and no way to predict if it will.

Your AN is still quite small, and you were fortunate that your doctor responded quickly with steroids to your hearing loss. You have a lot of time to research, while you are waiting for your 6 month MRI. On the issue of hearing preservation, there was quite a vivid discussion about it some months ago, Tisha and Tumbleweed come to mind, they are both members who were concerned about conserving their hearing and chose to have CK. You may want to seek their posts.

Don't hesitate to ask many questions, we will be glad to help as much as we can.

All the best,
Marianna

[doinoc]

Hello and welcome,  I've been in w/w since 2002 and ready to take care of things real soon.  I had no hearing issues at all at time of discovery of the tumor.  My symtom was all balance and dizziness.  2 years into w/w i had sudden hearing loss.  literally overnight.   3 months of steriods didn't bring it back. I've been without serviceable hearing for over 2 years now.  very sensitive to noise and loudness and constant tinnitus.
Hearing is no longer an issue for me as far as  preservation.  But i wouldn't change the w/w mode I've been in.  I've avoided surgery for a good bit of time and still only have a 1.5cm but now i feel my symtoms are telling me its time.  I don't think radiation is my best choice for my particular symtoms although i wish it was.  still doing a bit of reachsearch and reflection.
Bless you and peace in this journey
Deb

[leapyrtwins]

Life -

you should consult with one of the doctors at the Ear Institute of Chicago (www.chicagoear.com).  They do both radiation (Gamme Knife) and surgery.  Their website is slightly outdated, but they are the top AN docs in the Chicago area.  My neurotologist is Dr. Robert Battista and I highly recommend him.  His partner, Dr. Richard Wiet, is also a very good doctor.  Dr. Wiet's son Mark is new to the practice - not as much experience as the other two docs - but I hear he's had good training.

If you'd like more details, please PM or email me - you'll find my email info. listed in my profile.

Best,

Jan

[BT]

Hello life is beautiful,

I have had sudden hearing loss before as well.  That is actually how I discovered my AN.  About a year and a half ago I woke up one morning and could not hear a thing out of my left ear.  It also felt very full.  I went to and ENT and they did a hearing test.  I literally could not hear one of the beeps or words or anything out of my left ear but had perfect hearing in my right ear.  The ENT suggested a steroid shot in my ear...which I did.  He also suggested getting an MRI just in case.  My hearing came back completely 3 days later, and so did my MRI showing a 4 x 2.5mm AN.  When I did a 2nd hearing test on that day I had perfect hearing in both ears again.  The entire office at my ENT was shocked!

I have not had any hearling loss since that time.  I had a 2nd MRI after 6 months that showed no growth.  I was told by my ENT that I should now wait 1 year between MRI's unless one shows growth.  I am due for my yearly MRI in September...Right around my 28th birthday.

[Tisha]

Hi,

I just read your post and MK pretty much told you what I would have.  I did have SHL 3 weeks after CK, but with a strong round of steroids my hearing came back.  However, I went from perfect hearing 20db in the 6000-8000 frequencies to 45-55 db and it has stayed that way the past 5 months.  Thankfully, the conversational frequence went back to normal, but I'm still a bit bummed.

You can have another episode like MK did.  Also, Dr. Chang told me that at my age, 48 at diagnosis, that I would loss my hearing eventually if I did nothing.  So....that's when I decided I couldn't stay in W&W.  I just couldn't stand by and loss it by doing nothing.  Just my personality.  He did mention I would loss it because i was already having symptoms...tinny hearing, full feeling, loud backgrounds in restaurants, etc.  I've noticed that those have decreased.

I think that with a small tumor like yours, I probably would have W&Wed for awhile...to see if it would grow.  If it did I would take steps immediately, but again, that's just me.  Some people have the will and persistence to wait it out.  I was impatient.  Good luck with your decision!

Tisah

[Esperanza]

I had sudden and profound hearing loss and it was indeed this along with the vertigo attack which sparked the MRI which led to my
diagnosis of AN - had no noticable hearing loss before - was talking to my sister on a long phone call with no problems the evening before it went.  The steroids didn't work for me but then I was taking the wrong dose to begin with and didn't start them until 10 days following the loss.
I had been booked for a shot in the ear before the results came in but didn't go following advice that as it was a tumour it would be pointless (interesting to read of the return following an injection).  Personally, if I had any kind of chance of saving my hearing with surgery or radiotherapy (knowing what I know now!)  I wouldn't hang around on W & W.    
All the best on your AN journey..