Any chance of keeping hearing with a 3cm AN?

[arcteryx]

I'm 34 and was just diagnosed with a 3cm AN and am still in shock, like a lot of people here.

My only symptoms are some facial and mouth numbness. My hearing & balance are both perfectly normal.

Has anybody on this forum with such a mid- to large size tumor ever had an AN surgically removed AND preserved their hearing?  If so, where did you go and what procedure did you have?  (I guess translab is out.)

Thanks and hang in there!

[stein78]

I had retrosigmoid surgery for my 2.5cm AN last May.  My hearing was basically perfect too, just like yours.  The doc was real honest and told me that it's rare to save any hearing with a tumor of that size, but it does happen every once in a blue moon.  Unfortunately, I wasn't one of the lucky ones.  Is there a chance, there sure is.  Is it likely, probably not.  It's just the nature of the beast.  Best of luck to you!

[Larry]

There are lost of posts from people with large AN's, You can also explore radiation treatment although the theory is that 3.0cm may be too large.

Larry

[SKT]

You'll learn alot more about the different techniques for removal and the statistics on results as you see more doctors and do more research. Statistically, saving the hearing when opting for surgical removal, is very rare. The larger the tumor, the less likely the chance.  All the experts I spoke with were very honest with me and told me the chances of saving the hearing was next to nothing.  I had a 3.5cm - with a tumour of that size, I think you'll find that the main focus of your surgeons, if you go down that path, will be saving the facial nerve.  The repeated advice I received was that the translab approach is best suited to larger tumors as it gives the best access and minimises the risks of damaging that nerve.  But location of tumor as well as size will dictate the approach that will be recommended for you.

I know how awful it is to receive this news - but honestly,you will come through it just fine - and even if you do lose your hearing, you'll adapt.  Please do not hesitate to contact me by direct email if you have any questions.

You'll be in my thoughts.

[Joef]

you might not believe it now .. but of all the problems that one might have after surgery ... losing the hearing is
on the bottom of the list .. and would gladly trade my facial and balance issues for hearing loss .. and you can
get the BAHA hearing aid which helps... (but it not a good as natural hearing)

[Rex]

You're post sounds eerily familiar...  I was 36 when I was diagnosed with a 3.1 cm AN in 3/04.  Perfect hearing & balance and the only reaon they caught it was some slight numbness in and around my mouth.

Retrosig can preserve hearing, but because of the size of my AN the chance of hearing preservation surgeons gave me using retrosig ranged from "no chance at all" to <<1%l.  My surgeon (Dr. Jackler @ Stanford) told me that choosing retrosig would not increase the risk of facial nerve preservation and it was my choice if I wanted to "swing for the fences" and try to preserve my hearing.  I struggled with the decision, but ultimiately decided to go with translab.  The clincher for me was that with retrosig there is a greater chance of developing long term headaches which I felt would be more debilitating then being deaf in one ear.

I'm 18 mos post-op and doing well.  I was fortunate that the AN was not difficult to remove from the facial nerve so only only have sloght dry eye (can still wear contacts) and a very slight tingly feeling when my face is touched on the AN side.   SSD has not been a big issue for me.  The only times its a problem is when there is alot of background noise.

[matti]

My hearing was perfect prior to my surgery and with that in mind, my doctor opted for the middle fossa approach, which I was told was my best option to preserve hearing. My AN was 3.5 cm and once he got in there discovered it had wrapped itself around the hearing and facial nerves. He could not save both and decided that he would do whatever it took to save the facial nerve. Luckily he did save it, but had to sacrafice my hearing nerve. I am 7 1/2 years post op and although I desperately miss my perfect hearing, I think I value more, what that precious little facial nerve can do.

Please know that you will be fine, do your research and check out all options. You have come to a really wonderful forum, you will find a wealth of information as well as inspiration.

Take care and keep us posted.

matti

[russ]

Hi arcteryx
  Just to reduce future complication potentials and the unliklehood you will retain hearing, if this were my situation, I would opt for the translab procedure.
  Best wshes to you.   -Russ

[Kathleen_Mc]

I personally do not know of anyone with this size of tumor that has had it completely removed and kept thier hearing, I wonder if the could just removed majority and therefor leave that which encompasses the auditory nerve and save the hearing (if you could live with know the tumor is still in there) and then gamma knife the rest? Kathleen