What is your view of hearing preservation

[Keeping Up]

As a follow-on to my W&W post, the ENT brought up a very interesting point that I hadn't contemplated previously.  I had assumed that hearing preservation surgical approach meant pretty good, useful hearing.  He suggested otherwise, at least for someone like me who has very very good hearing in my non-AN ear.  I only have mild hearing loss (not quite sure of the PTA - but is probably 25db or better) - I have a big fall-off at 6000hz (or maybe 4000hz) but otherwise hearing loss is mild.  I have incredible hearing in the good ear - straight-lined across all levels at 0db (yeah me, guess I didn't listen to anything too loud when I was growing up).

So, the comment he had - that hearing preservation in the middle fossa or the retrosigmoid isn't exactly 'preserving' for me as my hearing is so good in the other ear.  Any differential greater than 15db makes the hearing loss noticeable but a db differential of 30db, or worse 50db would be pretty much useless to me.  Thus, if my right ear is 0db loss (now) and my left post-surgery with 'successful' hearing preservation gives me an approximate 50db/50% speech - am I really preserving anything functional?

As an example, I found the following extract from an article ... probably many many different articles with different rates, but I will gander somewhat similar theme.

RESULTS: In the group operated on by the middle fossa approach, the average preoperative pure-tone threshold average (PTA) was 23 dB with a word recognition score (WRS) of 79%, and the postoperative PTA averaged 49 dB with a mean WRS of 56%. In the group operated on by the retrosigmoid approach, the mean preoperative PTA was 16 dB with a WRS of 95% and a postoperative PTA value of 62 dB and WRS of 51% (hearing preservation rate of 47%).

Thus, in general terms, the average (again, who knows who will be average) post-op is closing in on the famous 50/50 rule (50db PTA average and 50 speech discrimination).  Is that really hearing preservation?? 

Now, my next topic of interest is the benefit derived from hearing aids if you were in the broad category of 50/50 rule on one side with excellent hearing on the other side.  It also occurred to me now that impaired hearing (either because of W&W and the pretty much guaranteed loss of hearing or any surgical intervention ... GK research comes later) on one side with a serious differential may be better than NIL once I start to age.  But, to be honest, I haven't got my head around the best scenario of hearing when I am in my 70/80/90s (given the chance, of course!)

Not quite sure I have written this out clearly.  It makes sense to me - but would appreciate any wise words of the crowd.

*************************
An article from 2000 - so likely rates have improved somewhat - but this is similar to what I have been told by the ENT

Here is a link

http://www.mdconsult.com/das/citation/body/116129929-4/jorg=journal&source=&sp=11444440&sid=0/N/11444440/1.html?issn=

[MAlegant]

My hearing was preserved 100 % but my tumor was growing from another cranial nerve.  It's still pretty miraculous and I think I'm the exception to the rule.  I had retrosigmoid.
Marci

[sgerrard]

My AN side hearing post treatment is about 50 db with 80% WR unaided. With a hearing aid, it does pretty well. My feeling is that any hearing is better than none, and you want as much as you can get. I would take 50/50 hearing and a hearing aid over SSD every time.

I would be a little wary of average PTA and WR scores. You can't tell if half the patients preserved 100% and half got nothing (avg = 50%), or all of them wound up with 50%, or how it was distributed. It may be more a measure of your chances of winding up with useful hearing, than a prediction of what hearing level you will have.

Have fun sorting it all out.

Steve

[leapyrtwins]

I had retrosigmoid and ended up SSD in my AN ear.

Jan

[Patti UT]

The best way I can descrbe my results from Middle Fossa,  ...... they were able to preserve  "measureable hearing",  but measurable hearing has proven to be quite different than "serviceable" hearing.   The additional headaches etc that I have and see so many middle fossa patients having post of compared to trans lab, I definetely think I would have chosen trans lab over middle fossa had I known how wotheless the hearing that is left would be.  They can measure something there, but I sure can't use it.

patti UT

[mk]

From what my ENT has explained, the most important is speech recognition. If you still have speech recognition, then even with hearing loss, conventional hearing aids can help. Otherwise, they are useless.

I had two brief encounters with sudden hearing loss, where my speech recognition was basically lost - however I still had some hearing left, which is what is described as "non useful hearing". I can say that although I couldn't really have a conversation over the phone on the AN ear, it wasn't as bad as being SSD. I think that the most important factor was that I still had the sense of directionality, the absence of which is usually very bothersome. I have been very fortunate that my hearing came back, but I can say for sure that if I end up losing my hearing eventually I would still prefer some of this "non useful hearing" rather than none at all.

Marianna

[Keeping Up]

Thanks everyone

Patti - sorry about your experience - it is your story that seems to hit home the most - you have 'preserved' hearing but it isn't helping you much.  I think what shocked me the most was the explanation of what is 'preserved' - and in many many cases (not all), that is a huge misnomer.

I certainly am not positioning my options as wait and watch and choose SSD over marginal non-useful.  I would hope my hearing would be marginally useful (i.e. directional sounds, even if no word recognition - but not sure I would chose to risk any facial issues for that!) once I have to choose an option (radiation or surgery) but making a decision assuming that retrosigmoid or middle fossa are 'hearing preservation' surgeries when a huge percentage of results end up being successful at 'hearing preserved' with rates close to the 50/50 rule doesn't seem like I am salvaging much given the sheer imbalance I would have between my very good ear and the ultimate hearing on the AN side.  Thus, to aggressive treat my small IAC tumor with retrosigmoid and end up with non-useful hearing (by sheer odds) doesn't seem to make a ton of sense - it seems I can wait 2, 4 or 5 years perhaps, and have a similar result.  The GK option remains on the table ... but again, it seems a significant majority lose useful hearing at some point as well - so to treat aggressively now, and lose a chunk in five years doesn't seem to make sense to me either.  I have 100% word recognition on both sides - so to lose any of that is a loss.

I have been reading a fair bit - and wasn't aware that the key is word recognition (in hind sight makes a ton of sense though!) - hearing aids help the db (volume) not the word recognition scores.  Wow, it does just get more and more complicated.  However, I am still very happy with my path at the moment - May might bring a completely different story.

I might try to speak to a audiologist to get a better picture about what is 'best' for the long term for someone like me - not considering surgical/radiation - but what type of marginalized hearing is easiest  to manage - and the options to assist.  One of the guys at work sister is an audiologist - I think she would help with some of the basics of hearing etc.

Questions never end do they!

Off to make Sunday morning pancakes

[Jim Scott]

I'm a simple guy and frankly, as soon as you got into all the statistics and percentages, you pretty much lost me.  No matter.  You seem to have a good grasp of the issue of hearing preservation and the reality that the term can be somewhat ambiguous.  As someone with SSD who formerly had excellent hearing in both ears - I just wanted to say that I would be happy to have 20% hearing in my 'AN ear'.  I function quite well with unaided SSD but the loss of directionality is occasionally problematic and noisy environments remain somewhat of a minor but persistent challenge.  Perhaps only marginal hearing in the 'AN ear' wouldn't be 'useful' (serviceable) - I get that - but it seems as if it might help.  Like you, as far as I can tell, my hearing in the unaffected ear is excellent (I've never had it tested) while my 'AN ear' is stone deaf - and I function quite well that way.  I advise you to explore but don't over-analyze your options because much will always remain unknown until after the fact (surgery or radiation) in regards to hearing 'preservation' and it seems as if you can over-complicate the your decision when you make hearing 'preservation' such a primary factor, considering it cannot be guaranteed no matter what course you take. 

I realize you're simply seeking the best 'odds' for the best possible outcome and I both honor that quest and share your hope for a very successful procedure, quick recovery and the preservation of hearing and facial mobility, afterward. 

Jim   

[Keeping Up]

I'm a simple guy and frankly, as soon as you got into all the statistics and percentages, you pretty much lost me.  No matter.  You seem to have a good grasp of the issue of hearing preservation and the reality that the term can be somewhat ambiguous.  As someone with SSD who formerly had excellent hearing in both ears - I just wanted to say that I would be happy to have 20% hearing in my 'AN ear'.  I function quite well with unaided SSD but the loss of directionality is occasionally problematic and noisy environments remain somewhat of a minor but persistent challenge.  Perhaps only marginal hearing in the 'AN ear' wouldn't be 'useful' (serviceable) - I get that - but it seems as if it might help.  Like you, as far as I can tell, my hearing in the unaffected ear is excellent (I've never had it tested) while my 'AN ear' is stone deaf - and I function quite well that way.  I advise you to explore but don't over-analyze your options because much will always remain unknown until after the fact (surgery or radiation) in regards to hearing 'preservation' and it seems as if you can over-complicate the your decision when you make hearing 'preservation' such a primary factor, considering it cannot be guaranteed no matter what course you take. 

I realize you're simply seeking the best 'odds' for the best possible outcome and I both honor that quest and share your hope for a very successful procedure, quick recovery and the preservation of hearing and facial mobility, afterward. 

Jim   

Thanks Jim

You actually raised this in another post .... my explanation is probably a bit skewed, and I am a numbers girl.

My point of view is likely different than many here because the tumor is so small and causing absolutely no symptoms other than mild hearing loss, tinnitus and fullness.  What the point my ENTs were raising that conservative treatment - i.e. doing nothing other than annual MRI - offers very very similar hearing preservation rates to either surgery or radiation.  Thus, they don't encourage a decision based on the hearing preservation rates.  It doesn't seem you win very often choosing treatment over no treatment IF THE TUMOR STAYS IAC (or at least less than 1-1.5 cm into the CPA).  Fiver years later, you likely could have the same hearing outcome whether you do nothing, radiation or surgery (obviously not translab).

So, it is rather specific to the wait/watch crowd. 

I do agree that some hearing, regardless of how poor, is better than SSD - but is it worth pursuing a risky treatment if that is the ultimate goal?  I guess that is where I sit on the watch/wait specturm at this point.   

[sgerrard]

I think the difference in my case was that the hearing was already clearly in decline - that is, consecutive hearing tests showed a pattern of decreasing hearing. That is the situation where watch and wait has a good chance of watching the hearing go away completely, but treatment has a chance of slowing down or stopping the decline. If my hearing had been stable, I would have waited. The emerging result from both surgery and radiation treatment is that hearing retention is more likely when the AN is smaller and more hearing is present, so if hearing is on its way out, acting sooner rather later makes sense.

For stable hearing, I think it makes sense to wait for some other call to action to emerge, such as growing large enough to press on the brain stem, or the beginning of facial nerve symptoms, or some other development. As long as hearing is not being affected, it makes sense that doing nothing will give the best hearing preservation rate of all.

Steve

[mk]

Staying in the IAC does not guarantee that the AN will not cause major symptoms (there are so many posts about this). Of course it will not threaten the brainstem, or other structures, unless it grows 2 cm or more, but it can cause balance problems, diziness, sudden hearing loss etc. So it is all a gamble - even the W&W approach has its risks. As always, it is a question of what risks you are more confortable with, clearly in your case you feel that you are more confortable with W&W, so this is the approach that you should follow.

Another point I wanted to make that based on my very informal statistics, Canadian doctors are more likely to suggest W&W, rather than treatment. And they will even do so with much larger ANs, like mine. Believe it or not, both neurosurgeons and the radiation oncologist I consulted with suggested that I don't need to do anything soon, and I could wait.  My AN was almost 3 cm for crying out loud. On the other hand, my impression is that some doctors in the States are way too aggressive, pushing for treatment for very tiny ANs. I am not sure if this is a matter of different philosophies, or if it has to do with economics.

Marianna

[Keeping Up]

Another point I wanted to make that based on my very informal statistics, Canadian doctors are more likely to suggest W&W, rather than treatment. And they will even do so with much larger ANs, like mine. Believe it or not, both neurosurgeons and the radiation oncologist I consulted with suggested that I don't need to do anything soon, and I could wait.  My AN was almost 3 cm for crying out loud. On the other hand, my impression is that some doctors in the States are way too aggressive, pushing for treatment for very tiny ANs. I am not sure if this is a matter of different philosophies, or if it has to do with economics.

Hey Marianna

That is a good point - but are you also part of the same practice as Trish and Anne-Marie???  I am not with the same doctor, but am with the same team.  I had meant to ask where your ENT was based and had assumed since you were treated at the same network of hospitals for the GK.  Thus, if you are are, four of the Canadian's on this board are treated by the same team of ENTs/same philosophy.

Shocking though - how long did they think you could wait?  Months or years?  You did have a rather large tumor.

I am fully aware, and accepting that my hearing will continue to disintegrate, more than likely slowly - the above mentioned doctors did publish a study about conservative mgmt of ANs - and pure-tone-average on average decreased something like 36db over a 10 year period, and word recognition declined 40% over the course of their study period.  Further, several patients in the study lost the option for hearing conservation surgery during the W&W.  (The other ear remained practically unchanged over the same period - as a comparison!)  [However, a significant majority never chose active treatment.]

Sorry everyone - I read research.  I helps me grasp the consequences of my decision (action or inaction!).  You find such cool stuff on the internet.

[sgerrard]

Canadian doctors are more likely to suggest W&W, rather than treatment. And they will even do so with much larger ANs, like mine.

I have seen the same thing about British doctors, although that may have been more so in the past. See for instance Diana Farragher's site on facial palsy: http://www.dianafarragher.co.uk/acoustic.htm

I think the view is that the side effect risks of surgery are significant enough that it is better to wait until you really need treatment, with the hope of never needing it. The American view is often that you will probably need treatment eventually, so the sooner the better. Which is the wiser view?

It is the conundrum of watch and wait. 

Steve

[mk]

[are you also part of the same practice as Trish and Anne-Marie???  I am not with the same doctor, but am with the same team.  I had meant to ask where your ENT was based and had assumed since you were treated at the same network of hospitals for the GK.  Thus, if you are are, four of the Canadian's on this board are treated by the same team of ENTs/same philosophy.

Shocking though - how long did they think you could wait?  Months or years?  You did have a rather large tumor.

No, I actually had nothing to do with the Rutka team. I wasn't even diagnosed by an ENT, but by my family doctor. I didn't have any hearing loss, and the reason why I went to see the family doctor was facial numbness. He ordered an MRI and the AN was found. He then referred me to a neurosurgeon here in Kingston. This guy obviously didn't know anything about ANs. He said that the operation takes 4-5 hours (only!), he even suggested middle fossa (for an AN my size  ). He was the one who told to me that I can wait - and that he had a patient who waited for 5 years before doing anything. Anyway I can go on ranting about this, but it was also my fault because I went unprepared. He was the one who referred me to the GK centre in Toronto.
The doctors there seemed to also suggest that there was no real rush - I sometimes wonder if they ever bothered looking at my MRI. They even suggested in their report that I was in a rush to get treatment because I was anxious after the sudden hearing loss that I had experienced a couple of weeks earlier.
Overall all these doctors seemed quite "casual" about my situation, which made me complacent, until I read more on this forum and I looked at my own MRIs.
So, you are certainly wise doing your research and reading all this medical literature. That's they only way to be informed when talking to the doctors.

Marianna

[kathylittlejohncobb]

I am a "newbie" on the site, but am almost 3 years post-op.  I had the retrosigmoid at House; my hearing had declined prior to surgery, but what hearing I had going into surgery was mostly saved, with only slight decline post-op.  My opinion is that any hearing is better than none, and I am totally in favor of trying to save whatever level one has.  Hearing was way up there on the charts to me, and entered greatly into the decisions about which operation to undergo, decisions made in consult with my husband and House physicians (of whom I can not say enough good things!). 

I have functioned since without a hearing aid, turning my "good ear" to a speaker when necessary.  Knowing that I can get a hearing aid when/if my hearing worsens is a good feeling, not a bad one. 

Wishing you best as you make your decisions,
Kathy