Just diagnosed - Looking at French study

[RandomWalk]

Hello all,

   I was diagnosed a few weeks ago with an AN roughly 13mm x 7mm . 5mm.  I've been following many of the posts here ever since... This is a terrific resource for those just starting to deal with an AN.  Like many this board before me, I now face the task of choosing the best approach to dealing with my AN.  My options at this point are W&W or Retrosigmoid.

     Based on the imaging, my AN occupies the entire IAC.  Strangely, I have near perfect hearing. I am curious if anyone here has any insight on this French study of the Retrosigmoid approach:

http://www.ncbi.nlm.nih.gov/pubmed/21113987

   This seems to suggest that patients with AN's that fill the IAC are much less likely to retain hearing post retrosigmoid.  I'm trying to make a calculated decision on whether the surgery is likely to cost me hearing or not.  Right now, I have no problems.  And, yet, if this study is to be believed, I'll have a substantially reduced chance of having hearing post-op... even compared to the average Retrosigmoid patient.

   If anyone has any insight on this - or has discussed this with their doctor - I'd really appreciate your time. 

Thanks... I'm happy to receive any advice you may have.

RW

[mindyandy]

I would recommend Retro for the chance to save my hearing. Just my opinion.

[lrobie]

If your AN is small enough, why isn't middle-fossa one of your choices? 

Lisa

[PaulW]

I think what is more important with this study is not the removal method, but whether the tumour fills the IAC or not.
 

[Ned]

Why not look at radiation if you want to preserve hearing.  Radiation certainly has its disadvantages as well, but with no current hearing loss, you might not lose any hearing.  Good luck.

[Syl]

RW:

I chose the retrosimoid approach in an attempt to preserve my 60% word recognition. My AN was partially in the IAC.  Post-surgery my hearing was at 20% word recognition. My tumor wasn't sticky like it can often be. It peeled right off making removal easier. Nonetheless, the nerve was stretched compromising my hearing even further.

I am not completely deaf in the AN ear, but my hearing isn't useable.

Syl

[Chances3]

Hi RandomWalk,

Welcome to ANA, I'm sorry you have one, but the good news is there are so many options to chose from today, and I suggest to find out what's best for you.  I chose surgery, the Middle Fossa approach which is above the ear.  I was told, this operation doesn't come without some risks, as the brain needs to be retracted.  However, the brain is covered in a protective covering called duramatter which means brain tissue is never touched.  I chose this procedure because my ENT doctor said it gave me the best chance for hearing preservation along with facial muscle preservation.  I am 16 months post op and my ear works pretty good, my face has a wonderful smile etc.  I hope this helps, and remember that no matter how much advice you might receive, it's going to have to be your decision to make, so learn as much as you can.

God Bless

[RandomWalk]

Thanks all.  I really value everyone's input.

   My tumor is small - but it completely fills the IAC.  This appears to reduce my chances of preserving my hearing through surgery.  I understand this to be true regardless of the surgical approach. 

   I have perfect hearing right now.  So I face the following tradeoff:  Perfect hearing now thru ? vs. Likely deafness post-surgery.

   So what do I do to maximize my hearing over the remainder of my life? (I'm 31) I have discussed this now with two doctors.  I'm waiting to hear back from House as well. I'm actually thinking about W&W to maximize my hearing.  The idea that surgery is not likely to help me is sort of depressing... but I'm trying a) be realistic; and b) to make a calculated decision.  Maybe it will be years before I lose my hearing... It's hard to say.

    Again all advice is appreciated!   

[PaulW]

Your tumour is small, and like mine completly fills the IAC.
I know you are looking at surgical options, but maybe worth considering radiation too if hearing preservation is important. I am now 19 months post Cyberknife and my hearing remains normal and has improved since treatment. Maybe worth googling some studies on hearing and watch and wait, I believe the average is 10db loss per year on W&W according to one study.
 

[lrobie]

How are they able to avoid radiating the nerves that are all around the tumor when it's in the IAC?  Mine is about the same size as yours, PaulW and RandomWalk.  I just can't get myself to believe that there won't be complications from radiation if it has already filled the entire IAC.  I already have balance issues and hearing loss.

Lisa

[PaulW]

Hi Lisa,
Radiation works because healthy tissue has a higher tolerance to radiation than tumour. Healthy tissue has the ability to repair itself, while tumour does not self repair.

So even if the nerves do get zapped the dosage is generally not enough to damage good tissue but enough to kill the tumour.
It is this little quirk that helps make radiation an effective form of treatment.

Yes AN's do swell after radiation, one of the supposed causes is that the tumour loses its ability to control fluid at a cellular level as it dies. So swell it might, but its probably spongey.

Please keep in mind that AN's inside the IAC already put enourmous pressure on nerves and blood vessels.
As the tumour grows it will often deform the boney internal auditory canal and make it larger and thicker, It will turn nerves into a flat ribbon, restrict the blood flow to the artery that feeds the cochlear and the nerves, and this is why small tumours can be so troublesome.

If you choose surgery, removing the tumour means severing all the capillaries to the tumour, which may also feed the nerve, Even if they save the nerve, the blood flow may not be enough to keep the nerves fully functional.
So nerve damage will be done in surgery too.
If you Watch and Wait, the tumour often effects the nerves also overtime.

Unfortunately there is no easy answer.

[leapyrtwins]

My AN was about the same size as yours when I was diagnosed (1.5 cms) and my neurotologist told me I could watch & wait (for a time), choose radiation, or choose surgery.  When it comes to surgery, he does both the retrosigmoid and translab surgical approaches.  I chose retrosigmoid.

My hearing was diminished, but I had decent word recognition so I wasn't comfortable just having my doc "take" my hearing through the translab approach.  So although the odds weren't in my favor, I chose retrosigmoid because I wanted my docs to at least attempt to save my hearing.  Long story short, my AN was wrapped around my hearing nerve and in order to entirely remove it my hearing nerve was sacrificed.

I got a BAHA nine months after my retrosigmoid surgery and it's been a Godsend in helping me deal with my SSD.

Just my story, for what it's worth.

Jan