at what percent do you try to save hearing?

[Keri]

Hi,

Even though I have surgery scheduled in late January (translab), I have a hearing question.

As I read these posts, or read about how people are making decisions about what to do, I see that many make their decisions based on how much hearing they've lost or retained.
For example, someone may say "I had most of my hearing, so we decided for radiation or middle fossia, or _____etc to retain what hearing I had." Or someone else may say, "Since I only had ____% hearing, we're going to do translab."
Without trying to oversimplify things, what is the percentage of hearing that you have / don't have to decide whether you're going to try to save what you have?

I have 60% loss in left ear. I have more hearing loss in the upper ranges and my word recognition is not very good. I'm getting translab because the doctor said that with the other two types of surgery my hearing would most likely not be preserved anyway.  With the loss I have, my doctors have said 'You don't have enough hearing to risk saving.'  What would be the percent that would determine that it was worth trying to save?

Thanks for the input!
Keri

[tenai98]

Hi Keri
Most go by the 50/50 method...and some even higher of having 70% of hearing.  Mine is at 52% word recognition and 65 db so we wont even try to save my hearing...translab it is...even with other approaches the doc said they probably couldnt save the hearing...

[sgerrard]

Modern hearing aids can amplify and filter sound quite effectively, but they can't correct distortions of the sound, so your word recognition score is very important. If you score less than 50% on a word recognition test, a hearing aid won't help, it will just make the distorted sounds louder. Scoring 75% WR would be better.

Your overall hearing level before treatment is a useful guide to the likelihood of retaining usable hearing after treatment. It seems that the higher your hearing level going in, the more likely you are to retain some afterwards. If you are below 50% before treatment, the chances of retaining some hearing after treatment (and six months later) are not as good. I think that is the experience for both surgery and radiation treatment, by the way.

So in your case, if your word recognition is low, then saving it wouldn't do you much good, and if your overall level is already below 50%, there isn't much chance of saving it anyway. Hence your doctor's summation, 'You don't have enough hearing to risk saving.' I would still consider radiation treatment as a way to avoid other risks, but I would agree that it makes sense to choose translab over middle fossa as a surgical method.

Steve

[lori67]

Keri,

That's a tough question.  I had perfectly normal hearing in my AN ear prior to my translab.  I chose to sacrifice the hearing in an attempt to save my facial nerve, which unfortunately for me, didn't work either.  (Translab gives the best view of the facial nerve during surgery).  I have good hearing in my non-AN ear, so I'm pretty much counting on that one remaining healthy and not pulling any fast ones on me. 

Of the two post op issues, hearing loss in one ear or facial nerve issues, I'd pick the hearing loss.  That's just my opinion.  I know I adjusted to the hearing loss more easily than the facial nerve damage.  It took a little while, but I did get used to it.

If your doctor thinks the chances of saving your hearing with other approaches are slim, I probably wouldn't risk putting the facial nerve in more danger of being damaged.

I'd  be interested to know if there is a certain percentage that doctors use as a guideline for their decision, though.  If you find out, let me know.  Just curious.

Lori

[leapyrtwins]

Keri -

as Lori said, this is a tough question.

I had diminished hearing in my AN ear, but good word recognition.  I chose retrosigmoid in the hopes I could keep the level of hearing I had.  My thought was why have translab when it would mean automatic deafness on my AN side.  Unfortunately, my docs were unable to save my hearing with retrosigmoid.  Ironically, although this approach is said to give you a greater chance of facial nerve damage, in my case it didn't hold true.

I guess the moral of the story is, no one can really tell what your outcome will be.  It's pretty much a gamble that you have no control over.  IMO the best you can do is educate yourself, find a qualified doctor or doctors, trust your instincts - and jump in.

Most side-effects, including hearing "issues", can be dealt with after treatment.  If you do end up with less than perfectly normal hearing, depending on the level of hearing you retain, there will be options.  The BAHA and TransEar are very good options for SSD, and from what I understand conventional hearing aids are very good options for diminished hearing.  There are also those who choose to "do nothing" about their hearing issues and just adapt.  It all comes down to what is right for you.

Jan

[lacey7]

Hi,
I had 45percent hearing loss before my surgery.  My surgeons also looked at my age - 62 at the time.  I did have translab b/c the surgeon didn't think he could save my hearing.  After surgery, the surgeon told me that my tumor was wrapped around my middle ear, so what ever kind of surgery he would have done.....nothing could have saved it.  He also said that when they do translab, they have a surgeon right next to them, and his only job is to watch the facial nerves, and how it's affecting them with whatever the doctor does. I think most surgeons also do that?  I'm sure with all neurosurgeons, the number one thing is to have the facial nerves.  I felt more comfortable with doing it that way.  Before my surgery, I really didn't think much about losing my hearing.  Now, it's a different story.  You can live and get used to living with single sided deafness (SSD).  But, they do have the BAHA and one other ear thing that can help. 
That was a great question!!
Don't be afraid to post other questions, if you have any.
This is a great group here, and you can learn alot.
God Bless,
Lacey

[Mark]

  He also said that when they do translab, they have a surgeon right next to them, and his only job is to watch the facial nerves, and how it's affecting them with whatever the doctor does. I think most surgeons also do that? 

Just an aside to the above:

Yes, virtually every experienced AN surgery team uses a monitor on the facial nerve during the procedure.

However, this usually instills a false sense of confidence in most surgery patients. There are a number of articles on the sensitivity and  range of various monitors and it is important to understand that they are not foolproof in preventing damage from occurring.

Mark

[Joef]

personally ... I like the 50/50 rule.. unless the size of the tumor is > 2cm .. then chance of headaches and facial problems over take the chance of saving hearing ...

in Medical circles... I think 3cm is the standard for needing to do trans-lab (no matter how good the hearing is) .. but based on what I have seen over the years on here.... I like 2cm better... because the chance of mind blowing headaches are debilitating... and hearing is not....

** just my personal opinion , talk to your doctor **

[EJTampa]

My ENT didn't tell me what level my hearing was at, but I repeated everything he said to me for the word recognition, so I assume word recognition is at 100 percent.  I have diminished hearing and very loud tinnitus.  I saw the graph of my hearing, and it's way below the "line" for high frequencies, but well above for lower.  I still use my AN ear for phone conversations too.  I am VERY much interested in saving my hearing.  If the facial palsy were just cosmetic, I'd almost trake that instead of losing my hearing.  Of course, there are many issues with the facial palsy that would make it worse than losing my hearing in the AN ear.
 
For what it's worth - I'm sending out cd's with my MRI's and expect to have my surgery some time in February.
 
Ernie

[mimoore]

If only it was a choice.  I would choose full tumour removal with no complications. If I had to have any issues I could live without hearing but please spare the face. Ha I got both.

I had perfect hearing with some ringing, and facial numbness. Nothing else. I chose retrosigmond surgery to try and save hearing not thinking the facial paraylsis would be an issue. Hello here I sit deaf in my AN ear AND facial paralysis. My lack of blink is the biggest pain in the BUTT! I would not wish this on anyone. Yes the loss of hearing is not fun either but I can live with it. Soon hopefully we will have the Transear in Canada and I can hear again.

No choices, I got what I got! Oh but really I am happy to be alive.
Honestly you will learn to adjust whatever the outcome. Hopefully you won't have to worry about a thing.
Michelle 

[Syl]

Keri,

I had originally decided to have translab because statistically it poses the least risk for facial nerve damage. Then I changed my mind ten days before surgery. I decided to have retrosig because both my neuro-otologists suggested that it would be worth it to try and save my 60-65% word recognition. However, 2 neurosurgeons recommended translab. As it turns out, my face is fine, but I lost more of my hearing. I'm not SSD so I'm not a candidate for a BAHA. My word recognition is at 20% now and the Dr. and 2 audiologists say that a hearing aid will not help me either. But I need to try out a hearing aid anyway just to get rid of that doubt.

Good luck.
Syl

[carter]

i am going to have cyberknife and one of the reasons is hearing preservation.  also down time, etc.

i know that i will loose more of my ability to hear due to teh radiation damage.  teh neuro surgeon really questiosned if my hearing level would really be missed yesterday.  My wife said that she has to translate a lot ... he kept asking if i could use a telephone ...  No i can't with that ear.  so he was trying to say that it may not be that good anyway .... 

but it helps in direction finding and with an ipod, i can hear stereo.   with teh aid in, i can still get use form my ear.


so you know that hearing is very important to me.   as i loose some due to teh radiaiton damage, it may be "useless"? 

with all of this said --- if i were to have the surgery .... i would say - take th ehearing and put all of your abilities to saving the face nerve!  not just to keep it in taact, but to have it to remain  workable.   

we have the AN ....   what is important to us?  the decison chart becomes ...


what is most important to you?

get it out or can you live with it in your head? 
will size /location allow radiation or is surgery required?
can you afford the down time of surgery?
can you live with risk of radiation not killing it - slight but present.  risk of pieces being missed in surgery?
age - size ---- wwait it out of do something?
aceess ratign - what is most important:

       hearing
       facial nerve
       balance
you have dr that you are confident in to do the selected proceedure?

these are the real questions that i pondered on what to do to decide on wait - radiaiton - surgery.  then to decide on cyber knife.

my own thoughts are that we are going to loose somethng in this battle .. but we can help to decide what .   


carter

[Pooter]

Not to play devil's advocate (usually Jan's job! ), but isn't the location / position of the tumor a major factor in what approach your doctor will recommend (in addition to hearing and word recognition levels).  In my case, I was told that there was a "very low" chance of saving any hearing I had left (which was minimal anyhow).  I was told at first that I would have a translab.  Then, with about a week to go all the paperwork said "retrosigmoid" on it.  I contacted the doctor to find out why the switch.  I was told that because of the location/position, retrosigmoid gave the surgeons the best view of the tumor.  For me, whatever gave the surgeons the best chance at getting the whole tumor was good for me.  As Jenni put it to the doctor, "I just want to know that when I'm 80, I have to buy *2* rocking chairs.. the rest we'll deal with".  Hearing was never really a factor for me.  It was more about where it was and how it was positioned.

Regards,
Brian