Risk of hearing loss versus when to get treatment...

[tatianne]

I went for a visit to my Neurotologist this morning. (Hes apparently quite experienced with ANs and was involved with a study for several years at Harvard in regards to ANs and I think NF2)

I was advised to wait and watch, my AN is small and has grown but not too much. I asked him this morning about wether or not getting treatment sooner rather then later would increase the odds of my keeping my current hearing level (right now Ive only lost a very little bit)..He said no, from what he has studied, going ahead with the GK now would not in turn keep my hearing level at what is now. The outcome of waiting or going ahead with treatment right now would be basically the same. GK right now would not increase my chances of keeping my hearing at the present level. Interesting.

My doctor, as much confidence as I have in him, is human and can make a mistake or form a biased opinion, so Im wondering what you all think about this little bit of info.

Thanks

[tony]

Yes it is a tough call
and a paradox for Doc and Patient alike
Historically, nearly all treatment options seemed to infer
a major change in hearing - while Docs could point to cases where
the AN simply stopped or died of its own accord
So from this the option of "Watch and Wait" was born
Size is important - in as much that over 3 cms radiation
is not really an option - and the surgery results (at 3 cms plus) are not
quite as good as the smaller sizes
That said at a growth rate of 2-4mm per year - you have a while to choose ?
By all means take time to get other views - a Gamma specialist may
be able to show action on the smaller tumours is less dangerous
In all cases they will want to see a confirmed growth path
before they opt to proceed - wise people..
Good Luck
Tony

[Pablo]

There is one thing that you should consider. Postponing treatment represents a benefits in case that symptoms do not worsen. However if you wait you have the risk of drastically getting symptoms worsen such as Sudden Hearing Loss or other nerves complications which sometimes cannot be corrected. With radiation for example it is clear that your hearing will not improve and will likely deteriorate in some cases but it may save your usable hearing in the long term. I think you should check hearing and watch for other complicating symptoms and make a decision for treatment before it is too late. I wouldn't do anything at all if nothing is changed so far. I had my AN treated because it was already stepping 3 cm size and decided I wanted FSR to perserve usable hearing.
 

[Richey]

I know that you are concerned with your hearing, my ear doctor told me that with an AN hearing is the least of things to be concerned about. In that he was talking about that balance and facial control issues are more difficult to deal with. I had GK for a small AN and I lost my hearing on that side but so far my tumor has not grown in a year and a half and I had no other bad affects from the GK.
  It's been my experience in reading on this site for some time now that most people have hearing problems with AN's no matter what option they use. There are a few exceptions that I have read about but very few. Watching and waiting may be a good idea. If the hearing starts to go you will know and if your balance starts being off you will know and if you keep getting MRI's you can tell what the tumor is doing regarding growth.
  I hope you will be at peace with a decision.

Rich

[susier]

I went for my first appointment yesterday.  My AN is very smal at 2mm and doc suggested Wait and Watch.  I have'nt lost any of my hearing to date, and he said pretty much the same thing.,..... that treatment of any kind at this stage would risk the hearing I have now.  He told me of several patients with small AN's located in the IAC that never got any bigger.  As impatient as I am to get something going, this make sense.  I do have another appointment at MD Anderson in 2 weeks with a Neurosurgeon and another ENT and am interested to hear if they agree.

[Battyp]

HI Susie,
welcome to our exclusive little club.

[Jim Scott]

Hi, Tatianne:

It would seem that, in your case, 'watch-and-wait' is a viable option.  Your own body (including any hearing loss) and annual MRI scans will keep you apprised of any sudden tumor growth and if that occurs, you may then make a decision as to your treatment. 

Because of the location of most AN tumors, unless they simply stop growing, hearing loss remains a distinct possibility, no matter the treatment.  Even so, I think your decision to seek other opinions, even those of non-physicians, is prudent as you 'watch-and-wait'. 

Thanks for your contributions to this forum.  I wish you continued good hearing and no tumor growth!   

Jim