Hearing Preservation, Mid to Large - LAST CALL

[v357139]

Does anyone know anyone who has had any success in preserving hearing for mid to large ANs, while also getting it all out?  Is that even possible?  Mine is 2.7cm, in the CB angle, also pressing on brainstem.  Hearing is still decent in that ear.  3 long months since diagnosis, and I am about ready to give up on hearing, and go with the doctor giving no chance to save hearing and wanting to translab for more direct facial nerve access.  But before I do, I'd like to make sure one last time, that I am not missing some doc who has had some success with hearing in ANs my size.  Thanks all.

[Jim Scott]

I don't think you missed anything.  To my knowledge, there is no doctor or procedure that can guarantee hearing retention following surgical removal of an acoustic neuroma of any size.  Obviously, the Middle Fossa and Retrosigmoid  surgical approaches offer the possibility of hearing retention but the odds are not terribly high and there are never any guarantees.  As you know,the Translab procedure eliminates the option of hearing retention altogether.  However, for most AN surgical patients, avoiding serious facial paralysis issues trumps hearing retention because with SSD, one can employ a BAHA to help compensate or simply adjust, as I have.  Facial mobility issues are often far more difficult to surmount and doing so takes some time.  The choice, of course, is yours as you will have to live with the results of your decision.  Whatever it may be, we'll support you and offer our hopes and prayers for a great surgical outcome  Please keep us updated.  Thanks.

Jim

[v357139]

Thanks Jim.  I will be deciding soon.  Just looking for a chance on hearing, but haven't found any yet for my 2.7cm AN.  Any others out there?

[mk]

I think it is extremely rare. In all these years we have seen very few patients with ANs of this size who have retained some hearing after retrosigmoid. Certainly the odds for hearing preservation are not good so most doctors will tend to recommend the approach that they feel has the greatest chances of preserving the facial nerve.

Marianna

[v357139]

Thanks.  I thought I saw some hearing preservation with retrosigmoid on this site, but seems like almost impossible in ones above 2.5cm.  Does that sound right?

[leapyrtwins]

Totally agree with Jim; no doc can guarantee you anything.

My AN was almost 3 cms and I chose retrosigmoid in the hopes that I could save my (diminished) hearing; my odds were 50/50.  During surgery my docs discovered my hearing nerve was wrapped around my AN, so in order to remove the entire AN they sacrificed my hearing nerve.  As a result, I am SSD (single-sided deaf).  I opted for a BAHA 9 months after my AN surgery and have never regretted it.

I can't recall anyone on the Forum who had a mid to large AN and kept their hearing.

Jan

[v357139]

Thanks.  ONe person in here told me they had 2.8cm and had hearing saved.  Just wondering if any more, or if  that was extremely rare once in a lifetime type of thing.

[CHD63]

As Jim and Jan said, no doctor can guarantee hearing preservation before any treatment, be it surgery or radiation, they can only "give it their best shot."

My original AN was 2.6 cm at the time of retrosigmoid surgery.  I had approximately 80% of my hearing before surgery, 20% afterward, but with 100% speech discrimination so I successfully used a traditional air-conducted hearing aid until the tumor grew back three years later (very unusual following total removal), necessitating further treatment.  Because of my somewhat unusual situation, a second surgery was done (translab) and all hearing destroyed.  However, a bone-anchored hearing abutment was implanted at the same time as this second surgery.  I love my Oticon Medical Ponto Pro!

Clarice

[mk]

Thanks.  ONe person in here told me they had 2.8cm and had hearing saved.  Just wondering if any more, or if  that was extremely rare once in a lifetime type of thing.

Other than Clarice, who already responded to this thread, I remember only one more person from the forum with an AN of this size who had surgery with Dr. Akagami in Vancouver and had her hearing saved. So indeed it seems that it is  very rare.

Marianna

[v357139]

Does sound rare.  Just trying to cover all bases.  Hearing is the hump I need to get over, as most docs I met proposing translab, and hearing is still decent.  I do realize facial is more important.

[alabamajane]

I agree with all that hearing preservation is rare,, but location of the tumor is a very important aspect to be considered also ,,, I had about the same size tumor, good hearing and was recommended translab as it was very deep and pressing on brainstem,, and as you say that gives best view of facial nerve ,, but just as no guarantees can be given about hearing ,, the same goes for facial nerve,,, that was also my most important nerve to preserve; however, it was not to be,, so I had translab and still lost facial nerve,,
I just tell you this so you go into surgery knowing there are no guarantees ,,period,, there are Dr.s That will leave sliver of tumor on facial nerve to preserve it and radiate it or watch it later,, I just feel you need to hear from all sides,, not to scare you or dissuade you from any decisions you have made,,
Best of luck to you, we all care on here how things go with each of us as we are in "unique" situations,,  Jane

[PaulW]

I believe hearing preservation for larger tumors is quite good using Cyberknife or Gamma Knife.. Around 50%
Facial nerve preservation approaching 100%
If hearing preservation is one of your goals, maybe further exploration of radiation is warranted.
Dr Kondziolka for Gamma Knife and Dr Chang for Cyberknife are two notable experts.
 

[v357139]

I agree with all that hearing preservation is rare,, but location of the tumor is a very important aspect to be considered also ,,, I had about the same size tumor, good hearing and was recommended translab as it was very deep and pressing on brainstem,, and as you say that gives best view of facial nerve ,, but just as no guarantees can be given about hearing ,, the same goes for facial nerve,,, that was also my most important nerve to preserve; however, it was not to be,, so I had translab and still lost facial nerve,,
I just tell you this so you go into surgery knowing there are no guarantees ,,period,, there are Dr.s That will leave sliver of tumor on facial nerve to preserve it and radiate it or watch it later,, I just feel you need to hear from all sides,, not to scare you or dissuade you from any decisions you have made,,
Best of luck to you, we all care on here how things go with each of us as we are in "unique" situations,,  Jane

I guess the answer is there are no guarantees.  Thanks.

[v357139]

I believe hearing preservation for larger tumors is quite good using Cyberknife or Gamma Knife.. Around 50%
Facial nerve preservation approaching 100%
If hearing preservation is one of your goals, maybe further exploration of radiation is warranted.
Dr Kondziolka for Gamma Knife and Dr Chang for Cyberknife are two notable experts.

All recommend surgery over GK due to size and location.  Thanks!

[v357139]

Well just to leave no stone unturned, I am seeing a Dr. Kalmon Post at Mt Sinai.  Apparently he has some expertise in hearing preservation.  He also requires a BAER test, which no one else asked for, so I will learn something new.  Anyone have knowledge of DR Post?