Hearing Loss - the bottom line?

[SGBlons]

Naturally, I really don't want to lose all my hearing in my AN ear.  So I have been very motivated to read everything I can about "hearing preservation."  Is it possible?  Which treatments give the best chance of hanging on to what I have? 

The evidence is far from conclusive.  Clearly, as attested to on this forum, some people have kept useful hearing after surgery or after radiation or while waiting and watching.  And, just as clearly, others have lost all useful hearing after following the very same paths.

But the more I read, especially the long-term stories, the more I am forced to accept this conclusion:  EVENTUALLY, sooner or later, it seems almost everyone winds up with no useful hearing left in the AN ear.  As one doctor put it to me, any hearing we are able to hang on to is just gravy.  Another said the acoustic nerve just doesn't seem to be very robust or resilient.  Once it has been disturbed by the presence of an AN it seems to just give up, quickly or slowly.  Hearing preservation, even for the luckiest ones, may be a temporary thing.

If this is all true, it seems like very bad news.  On the other hand, maybe it means I can stop obsessing about hearing preservation as a goal and focus on other, better reasons for choosing treatment options.  Just accept hearing loss as part of the deal - probably - ultimately.

Have you come to the same conclusion?  Or have you read the evidence in a different way?  Are you determined to preserve whatever hearing you can, even if it may be a long shot?

[chloes mema]

My ENT told me Tuesday morning that the auditory nerve is the wimpy nerve and what I should concentrate on is preserving the facial nerve.  He also said I can live without the balance nerve since the right side (non AN ear) will compensate.  So guess I am doomed to hearing loss on the left side (AN).   Currently wearing hearing aids in both ears but the left ear (AN) is considerably less functional.

Karen

[Mickey]

On W+W status going on 5 years now my hearing is unchanged. With my AN approx. 1cm and stable also, I would be happy with this alone. As we get older its inevitable that your hearing along with your eysight and alot of other things are not going to be what they used to be. In any case staying healthy as possible is so important to growing older gracefully. Hearing so far so good with me and this method... Best wishes, Mickey

[leapyrtwins]

The mid-fossa approach gives the AN patient the best odds of keeping their hearing, but not all docs do this approach and not all AN patients are eligible for it (depends on tumor size and location).

Translab typically means automatic hearing loss, although there are exceptions to this.

Retrosigmoid generally gives you the chance of saving what hearing you have, but the odds aren't the greatest.  Some who have retrosigmoid retain their hearing, some (like me) don't.

Thankfully for those of us who end up SSD there are some decent options - specifically BAHA and TransEar.  I opted for a BAHA implant and four years later I'm still thrilled with it.

Jan

[Twindy]

This has been an important question for me as I have very good hearing right now.  I've been told and read many different and conflicting things.  Some say do radiation in order to preserve hearing, but my dr. has said the opposite.  He claims there is certain eventual hearing loss (6-9 years out) with radiation.  My surgeon quotes 60% chance of saving "serviceable" hearing with mid fossa approach, but I think his numbers are a bit higher than national average--he does many mid fossa surgeries/year.  My understanding is that the better the surgeon, the better the chances of a good outcome.  Those recommending radiation quote higher percentages for hearing preservation after treatment, but I read a paper where the number of people who keep their hearing drop over time to about 40%.  It's been very confusing!
But do let me know any info you find in your research--like I said, I'm searching out an answer to this as well.

[leapyrtwins]

My understanding is that the better the surgeon, the better the chances of a good outcome. 

Medicine is a science - and it's not an exact one.

Doctors are human, they aren't Gods. 

While a good surgeon - and one who has experience and is qualified to do AN surgery - is important, not everything can be controlled by the surgeon.  And no one can guarantee you a good outcome; in fact, you should be wary of a doctor who tells you things like "I can definitely preserve your hearing". 

Statistics should be used as guidelines, not absolutes - and any doctor worth his MD (and conscious of malpractice suits) will tell you that.

Jan

[PaulW]

Nice article here on long term hearing preservation with Gamma knife.
51% after 10 Years.

For those with small tumours in the IAC long term hearing preservation rates are higher
Cyberknife may also have a slight edge over Gamma Knife.

http://www.cns.org/publications/clinical/55/pdf/cnb00108000047.PDF

Small partial extract below..

"Hearing Preservation
Preradiosurgery hearing can now be preserved in 60 to
70% of patients (Fig. 6.6) with higher preservation rates
found for smaller tumors. In a long-term (5- to 10-yr
follow-up) study conducted at the University of Pittsburgh,
51% of patients had no change in hearing ability.21,47 All
patients (100%) who were treated with a margin dose of 14
Gy or less maintained a serviceable level of hearing after
intracanalicular tumor radiosurgery.68 Among patients treated
after 1992, the 5-year actuarial rates of hearing level preservation
and speech preservation were 75.2 and 89.2%, respectively,
for patients (n  89) treated with a 13-Gy tumor
margin dose"

[cindyj]

If this is all true, it seems like very bad news.  On the other hand, maybe it means I can stop obsessing about hearing preservation as a goal and focus on other, better reasons for choosing treatment options.  Just accept hearing loss as part of the deal - probably - ultimately.

Have you come to the same conclusion?  Or have you read the evidence in a different way?  Are you determined to preserve whatever hearing you can, even if it may be a long shot?

I had perfect hearing in my AN ear going into surgery, but I chose translab knowing I would lose it instantly.  During my research and soul searching about which treatment approach, I was always much more concerned about relieving my periodic vertigo and preserving my facial nerve.  Yes, about a month or so prior to surgery, I did mourn the soon-to-be loss of my hearing, but only for a "few minutes."  Turns out, it has not been so bad being SSD - for me, anyway.  Especially compared to vertigo...and especially compared to so many, many other things in life that could be wrong with a person...That's just me, though

It is the hardest decision, but once you make the one that is right for you and what concerns you, you will be at peace about it.  I wish you well!  We are all here for you,

cindy

[Twindy]

Thanks for the link Paul!  Very helpful.

[Syl]

SGBlons,

I chose retrosig in the attempt to save my 60% word recognition. During surgery, the nerve was monitored. The tumor peeled right off the nerve, but I lost even more of my hearing. My last hearing test showed my hearing was at 20% post-surgery. It took me a long time to learn to recognize many sounds again.

I didn't realize it then, but hearing loss would be the least of my worries. I have struggled considerably with dizziness, balance issues and chroniche headaches. My head rarely felt clear & connected to the rest of me.

I'm almost 4 yrs post-op. The dizziness, balance & headache issues have subsided a great deal & my head feels clear & connected most of the time. I feel really really good now.

We have a great deal in common, but each story is unique. This is just my story.

There is nothing wrong with trying to save your hearing, but understand that there are many risks.

Good luck with your decision.

Syl

[PaulW]

Hi Twindy,
Some docs are certainly very sceptical of radiation. There is a reason for this.
The radiation of old pre 1990, did leave most people deaf after 5-10 Years, and facial nerve and other complications were common.
This is what happenned when standard Linac dating back to the 50's was used. There was only CT Scans, which made it impossible to see the tumour clearly, if at all. It was difficult, if not impossible to reduce radiation dosage to the cochlear to less than 4Gy. The maximum the Cochlear can stand before problems and hearing damage start.
 
Dosage planning was done without the aid of powerful computer programs, that model the tumour and dosage in 3D. Radiation was applied in a 2D arc, limiting the ability to avoid damage to good tissue, Accuracy of the machines was +-2mm, but the imaging accuracy made things far worse than +/- 2mm which means +/- 4mm was more likely with CT only planning.

Today we have reduced dosages, Gamma Knife and Cyberknife apply the radiation in 3D, sparing more good tissue.
The accuracy of both Gamma Knife and Cyberknife are sub 1mm. MRI's have a resolution of around 0.2mm which has hugely attributed to the ability of the new generation machines to be so much more accurate. Both Gamma knife and Cyberknife are talking total machine accuracy of under 0.7mm including errors introduced by the imaging.
The ability to model the tumours in 3D also means they can administer the radiation far more accurately, reducing radiation dosage to the Cochlear which is critical to preserving hearing.

Many of these doctors have not had the opportunity yet to see patients 10 years after the latest radiosurgery treatment.

[sunfish]

I had CK, and my hearing has remained unchanged since before treatment.  I had significant high frequency loss pre-CK (and still do).  I use a hearing aid on my AN side, which helps somewhat.  Hearing in my "good" ear is just fine.  My hearing loss was diagnosed almost three years ago, with no change.

[lrobie]

I am still pre-treatment.  I decided, upon learning of my AN diagnosis, that I would watch and wait in hopes that it would not grow.  My hearing was back to normal after my sudden hearing loss.  However, during my two years of watch and wait, my hearing is now down to 64% speech recognition.  My AN now completely fills my IAC.  This tells me that it is pressing on my hearing nerve which is slowing dying.  I cannot get my head wrapped around the idea of having my AN radiated knowing that it is already completely filling a space and causing more symptoms.  I don't think I've seen anyone on here who has had radiation where they did not get some swelling.  To me, swelling = pressure and pressure = worsening of symptoms. 

Lisa

[sunfish]

Not sure my AN swelled particularly post-CK.  However, it might have, but we just missed the swelling in between MRIs (done every 3-6 months in my case).  It's never measured any bigger, and I've had 4 MRIs post-treatment.  It would be hard to know what to do if the AN was filling up the IAC, as you mentioned, Lisa.  That's why it's so important to consult with doctors with whom you have a good, trusting relationship.

[nftwoed]

Hi;

  Re, hearing; I think it's fairly safe to assume the better the hearing going into Tx, the better coming out and remaining.
  Hearing retention seems to be pretty much a wild card and unpredictable.
  I think the very best estimates for an intracanicular AN receiving either irradiation or Mid Cranial Fossa surgery are about a 98% serviceable hearing retention rate.
  I believe the potential for increasing morbidity goes up at a tumor size of approx. 2.00 cm.