RetroSig & Hearing Preservation

[KPM]

I've chosen retrosig procedure with hopes of preserving hearing since I have very good hearing now.  I know chances are slim, but I'd like to give it a shot given my tumor size and location.  I've selected experienced surgeons and I have confidence they will do just fine preserving facial nerve function and I am prepared for SSD if that is the final outcome.  For anyone who has chosen this procedure for same hopeful reasons...how has your experience been with hearing preservation?  Thanks and my best wishes to all of my new AN friends.

[CHD63]

Welcome, KPM, to this forum.  I'm glad you found us!

I had already lost approximately 20% of my hearing in my AN ear, but still maintained 100% speech discrimination, when I was diagnosed with a 2+ cm acoustic neuroma almost three years ago.  Because it was deemed to be a rare rapidly growing type and with my history of radiation exposure as a child, it was recommended and I ultimately chose surgery to remove it.  As a musician I was terrified by the prospect of losing my hearing.  There are many excellent surgeons in the country, but I chose Dr. Takanori Fukushima at Duke University who has done well over a thousand AN removals to do my surgery.  He recommended the retrosigmoid approach for hearing preservation reasons.  Post-surgery, he said to wait six months before another audiogram because sometimes it takes that long for the hearing to settle after surgery.  However, I had an audiogram at three months and six months out and it is consistent still.  I now have 20% hearing in that ear with 100% speech discrimination and wear a Widex digital hearing aid that boosts it to an acceptable level.

I have had no headaches or facial issues.  I do have significant tinnitus, but it is tolerable most of the time when I am wearing my hearing aid.  I have significant balance issues but I have had surgeries on both sides and thus have no vestibular function on either side ..... so my case is different than a unilateral AN removal.

Gather your questions and ask away.  Tell us a little bit more about yourself; size and specific location of your AN, your symptoms, etc.

Many thoughts.  Clarice

[Syl]

Welcom, KPM

I had retrosig surgery 2.5 yrs ago. Before surgery, I had about 65% word recognition. I lost more of my hearing with the surgery. My last audiogram shows that I'm at 20% word recognition. Yeah, pretty useless. Though a hearing aid doesn't do much for me with conversations, I got one anyway. It helps with diretionality outdoors & it soothes my tinnitus.

Good luck with your surgery. When it is scheduled for? Keep us posted.

Syl

[leapyrtwins]

KPM -

as you say, with retrosigmoid chances of saving your hearing are slim.  However, I felt it was a gamble worth taking, so I chose retrosigmoid over translab.  I told my docs that I felt they should at least try to save my hearing and if it wasn't to be, it wasn't to be. 

I ended up SSD; when my surgeons got inside my head and were able to view the tumor they discovered that my hearing nerve was wrapped around it.  They had to make a decision about whether to save the nerve and leave part of the tumor or remove the entire tumor and sacrifice the nerve.  They chose the latter; a choice I whole-heartedly supported once I was awake and told of their decision.

Being SSD isn't the worst thing in the world.  Lots of people learn to cope with it just fine.  For those who don't learn to cope (I was one) there are options like the TransEar or the BAHA. 

I opted for a BAHA and have never regretted my decision, as I absolutely love my BAHA 

I have also never regretted my decision to have retrosigmoid instead of translab.  It was the right decision for me.  You need to make the right decision for you.

Good luck,

Jan

[Jim Scott]

KPM ~

Hi, and welcome to the ANA website discussion forums. 

Unfortunately, I can't offer you a personal retrosigmoid/hearing preservation story but I can tell you that being SSD is a handicap but not a disability...at least for me. 

I underwent retrosigmoid approach AN debulking surgery but only because my neurosurgeon thought this was his best approach at the tumor, which was quite large.  I had begun losing hearing in my left ear for some time but procrastinated consulting a doctor about it, blithely attributing the unilateral hearing loss to 'age' (I was in my 50's) and my lengthy career as a radio broadcaster (wearing tight-fitting earphones blasting loud sounds, for hours).  By the time I saw a doctor, had an MRI scan and was diagnosed as having an acoustic neuroma, my hearing in the affected ear was gone.  I knew the 'odds' of preserving hearing with 'retro' surgery was approximately 40% but I wasn't too concerned because over the years , as my hearing had slowly but surely diminished, then eventually disappeared, I had learned to adjust to being SSD.  Post-op, my hearing in the affected ear did not return, although my neurosurgeon said there was a very slight chance it might improve somewhat.  It didn't.   So, you probably have a four-out-of-ten chance of 'saving' your hearing with retrosigmoid approach surgery.  Well worth the chance, if your doctor approves.  If you lose your hearing in one ear, it won't be the end of the world but it could be a nuisance and even an impediment, depending on your work and lifestyle.   If so, as Jan counseled, the BAHA is always an alternative. 

Jim