ANA Discussion Forum

General Category => Hearing Issues => Topic started by: jbbrown15 on May 11, 2017, 09:37:27 pm

Title: Continued hearing loss years after radiation
Post by: jbbrown15 on May 11, 2017, 09:37:27 pm
I'm 6.5 years out from fractionated stereotactic radiation on my 2.9 cm AN.  I recently looked at my audiograms over the course of years.  I only had mild loss pre-treatment, but have had big declines in hearing since then.  Audiograms at 6 months, 2.5 years and 5.5 years each show additional hearing loss.

I'm' curious about whether anyone else has noticed changes in hearing years after radiation.  Why would it continue to decline so long after radiation treatment? 

I also had a major flare of vestibular symptoms around 5 years after radiation and have not yet recovered to where I was before that flare. 

I wonder if the loss of hearing function could be evidence that my vestibular nerve was still suffering new damage 5 years out?

Title: Re: Continued hearing loss years after radiation
Post by: Echo on June 25, 2017, 08:26:50 am
Hi Jean,

I had Gamma Knife for a 2.4cm AN, 3.5 years ago.  I was told at the time that it could take up to 5 years to see the full effect of the treatment.  I was to expect complete hearing loss within 3 years.  Well my hearing has deteriorated but it's still somewhat usable. I can hear loud sounds but my word discrimination fluctuates from 30 - 20% and that has been the pattern for the past 3 years.   So to answer your question, yes, I do think it's possible to still see some deterioration in your hearing this far out from treatment. We all react somewhat differently but if you have concerns, I would check with your Doctor.

Title: Re: Continued hearing loss years after radiation
Post by: ANSydney on June 25, 2017, 05:11:05 pm
Being told to expect complete hearing loss within 3 years following Gamma Knife isn't a good endorsement of GK. I thought one of its selling points of GK was increased chance of hearing preservation (above 50% speech discrimination).
Title: Re: Continued hearing loss years after radiation
Post by: PaulW on June 27, 2017, 09:00:32 pm
There is increasing evidence that hearing loss after radiation has multiple factors.
Here is a paper showing hearing loss caused by facial schwannomas that are not even in the Internal Auditory Canal

The latest theory is that proteins given off by the Schwannoma are toxic to the inner ear.

This explains why Gamma Knife for other tumors doesn't cause hearing loss.
Why Facial schwannomas do cause hearing loss
Why getting Gamma Knife sooner has better hearing preservation rates.
Why being on Watch and Wait can cause you to become deaf in the absence of growth..

Gamma Knife does not kill the tumor it just stops it from replicating, so in theory it keeps pumping out bad proteins for years..


Title: Re: Continued hearing loss years after radiation
Post by: ANSydney on June 27, 2017, 09:23:26 pm
I'm querying the statements:

Why getting Gamma Knife sooner has better hearing preservation rates.
Why being on Watch and Wait can cause you to become deaf in the absence of growth..

From this paper  ( ), Gamma Knife accelerates hearing loss and watch and wait gives the best outcomes for with regards to hearing. Notably:

 "In the literature, to our knowledge, there have been no reports of the hearing preservation after 10 years or more after hearing preservation surgery or radiotherapy. In the present study [no active treatment], 95 patients had been observed for 10 years or more. According to the AAO classification, 46% maintained good hearing after 10 years or more compared with 45% using the WRS classification and 75% of patients with 100% speech discrimination at diagnosis.".

Title: Re: Continued hearing loss years after radiation
Post by: PaulW on June 27, 2017, 10:37:34 pm
Ahhh you have to love these studies....

With Acoustic Neuromas you can find studies supporting W&W, surgery or radiation!
Title: Re: Continued hearing loss years after radiation
Post by: ANSydney on June 28, 2017, 06:27:47 pm
Paul, yes you can get a study that shows evidence of just about anything! That makes in hard for us ANers!

Those three papers are all from a single hospital in Marseille France and by the same authors. So its the one source.

I went through my papers last night and you can certainly get any answer you would like about gamma knife and hearing. There are papers that show that gamma knife is protective for hearing loss and some that show there is no difference or accelerates hearing loss:

I'll quote a passage from the second paper:

Active treatment with microsurgery or gamma knife surgery did not appear to be protective, because patients who were observed had the greatest probability of durable hearing. Patients in the surgical series had the greatest hearing loss.

Two more papers of interest are:

The first paper (Fig. 2) shows a linear drop in hearing preservation out to 4 years and stabilizing thereafter at ~55% hearing preservation. The second paper (Fig. 3) shows a steady decline forever. At 10 years only 24% preserve hearing and at 15 years only 12%. It just keeps getting worse. Unabated.

My conclusion is that if you have a vestibular schwannoma, you will probably loose you hearing no matter what path you take. There are just ways to speed up the process.

Getting back to the three cited papers from Marseille, they had a failure for conservative management of 74% and growth for 77% of tumors. The "conventional" wisdom is that two-thirds don't grow (I believe it is closer to three-quarters don't grow - and of course I can provide papers as evidence!). Nobody is talking about only one-quarter of vestibular schwannoma tumors don't grow! Also, 74% failure rate has to be compared to . Here only 7.6% failed conservative management. Are the first set of papers over treating or the second paper undertreating. I can imagine overtreatment, but how do you undertreat with no negative outcome. For this reason I put less weight on the Marseille set of papers.

From my extensive research, there are reasons for gamma knife (a large AND rapid growing tumor), but if all you are after is hearing preservation, gamma knife just makes things worse (and you have to content with the possibility of communicating hydrocephalus, malignant transformation and new deficits). There may be a case for a rapid growing tumor that is not large, but here you are gambling.

It takes a very good understanding of where errors, biases and conflicts can occur in articles to know what is going on. Having a vestibular schwannoma is a serious event, but understanding the literature is a bigger problem. Hercule Poirot have a field day.

My final comment is that there is no interest in solving the problem. Step one in arriving at the correct picture would be to establish the natural growth of the tumor. If I were to run an experiment in three different locations around the world with 100 patients each I would get the same answer for natural growth. From this base we would be able to solve the mystery that is a vestibular schwannoma. In all these decades we still do not have an answer to the fundamental question, what percentage of ANs grow?
Title: Re: Continued hearing loss years after radiation
Post by: PaulW on July 01, 2017, 03:51:25 pm
One of the problems with the study above is that many people that have radiation have it later in age.
One study I read if am correct showed that your hearing declined at the same rate after 5 years as it would naturally, and that Gamma Knife did take about 20db off your hearing.
Using the 50:50 rule as this stud has. 50 percent word descrimination score, -50db hearing loss as what is considered servicable hearing there is almost no room to play with.

By the time you are 60 even a normal person will be down to -15-20db add radiation -20db plus age related hearing decline for 10 years -15db. Add 10-15db loss for the original tumour hearing loss that took you to the doctor and your hearing won't be considered serviceable after 15 years

Further to that, with the improvement in hearing aids they now consider -65db as serviceable.
So many people in that study that show they do not have serviceable hearing actually do

Also many people that don't have serviceable hearing still have hearing.
Which means you can still locate the direction of sounds. Any extra information coming in the bad ear does get interpreted by the brain, which does help with hearing overall. Some hearing is better than none at all

Radiation often affects the high frequencies but doesn't affect low frequencies anywhere near as much. My hearing today at 500Hz and below is perfect, 7 years after radiation. My high frequencies are not great. That is not unusual for someone who has had radiation. That can make your PTA look bad, but your perception of hearing loss may not be as diminished because you still have very good hearing at lower frequencies.

There are so many variables.

One of the problems with W&W studies is often the people that are lost to follow up, have gone elsewhere for treatment. This can skew the results..
I guess just like proactive gamma knife could show high success rates, purely because 50% were not going to grow anyway.

There are certainly some studies out there indicating that getting a small AN radiated at a younger age has very high levels of hearing preservation. However many of those could be radiated unnecessarily today. There is some research being done looking for bio markers in the blood to help determine whether your AN is a grower or not. Maybe one day in the near future we will treat those that need treating earlier, and those that don't can remain on W&W.
Title: Re: Continued hearing loss years after radiation
Post by: ANSydney on July 01, 2017, 06:38:12 pm
Whether radiotherapy preserves or accelerates hearing loss certainly has differing opinion.

I would be interesting in getting a link to the normal hearing loss with age figures. It's hard for me to find, but in my notes (I don't know the source), I've got 6 dB/10 year loss with age. Also -15 dB normal loss for a 60 year old appears to be high.

With regards to those lost to follow up in studies, I think they have statistical mechanisms for accounting for those that are lost to follow-up.

The paper you have cited has flaws as discussed in

My personal assessment is that radiotherapy accelerates hearing loss. You do not have radiotherapy to preserve hearing. There is a place for radiosurgery and that is for a rapidly growing tumor that is threatening to become large. If there is not rapid growth (>5 mm/year) that is not threatening into get large, a 2 year period (5 MRIs) will give you information about growth. Remember, most tumors do not grow following diagnosis and its very rare for tumors to grow after 4 years from diagnosis.
Title: Re: Continued hearing loss years after radiation
Post by: PaulW on July 02, 2017, 03:54:15 pm
My personal view is that radiation improves the odds of hearing preservation for some, and makes it worse for others. Problem is we don't really who it will help and who it won't.
Radiation for other tumours doesn't cause the same amount of hearing loss if any hearing loss.

It appears to me that the causes of hearing loss are complex.
While there are links to nerve damage, compression, and reduced blood flow to the cochlear it doesn't explain everything.
I personally think the protein emissions from the tumour, which are proving to be ototoxic play a far bigger role than we give them credit for.
How those emissions work for W&W versus radiation is not understood at all.

Title: Re: Continued hearing loss years after radiation
Post by: ANSydney on July 02, 2017, 05:30:50 pm
It is interesting that radiation for other types of tumors, presumably in the same area, do not cause hearing loss. It would be great to discover the cause of hearing loss and then radiation may be able to be adjusted to improve outcomes. Lots to be discovered yet.
Title: Re: Continued hearing loss years after radiation
Post by: PaulW on July 03, 2017, 03:40:40 pm
I guess that's why this paper is so important

Its yet another paper showing a link to protein emissions damaging your hearing.

A facial nerve schwannoma with no IAC involvement shouldn't affect your hearing, but it does..
Once again the cochlear is damaged.

More links to proteins and hearing loss

It is known that radiation makes the tumour produce more proteins for a lengthy period until it reduces or stabilises after radiation.

I feel a significant factor of hearing loss is the amount of ototoxic proteins that are in the cochlear, your age, and how long you have been exposed to the proteins.
It explains a lot of stuff... like why some people with big tumours have no hearing loss.(fast growing tumour but cochlear not exposed to toxins long enough)
Why small non growing tumours cause hearing loss with no visible nerve damage. (Exposed to toxins for 10+ years)
Why radiation for AN's causes hearing loss but doesn't for other tumours to the same extent. (Radiation causes AN's to emit more proteins for a few years)
Why facial schwannomas cause hearing loss, but other tumours often don't in the same location.
Facial schwannomas have the same genetic make up and emit the same ototoxic proteins as AN's

Title: Re: Continued hearing loss years after radiation
Post by: JLR on July 03, 2017, 05:41:21 pm
Hi All, My hearing was near perfect before and after Cyberknife. Had CK in 2010. By 2016 the AN started to grow. November 2016 I had retrosig surgery. At that time I lost my hearing surgically on the right side.  I am 67 years young and up till surgery my hearing was perfect even with the radiosurgery. I had regular hearing tests - although I had and still have tinnitus - all those audio tests were good.  Although my left side compensates for the right sided deafness but in a noisy crowd i.e wedding, the noise is overwhelmingly loud. Joan
Title: Re: Continued hearing loss years after radiation
Post by: ANSydney on July 03, 2017, 05:54:34 pm
Hi Paul,

Thanks so much for links to those papers. I've only read the abstracts, and they are interesting. And one of those is from July 2017!

The one that really caught my attention is the last link. It appears that some tumors secreted proteins that are ototoxic (damage hearing), while others are otoprotective. That is a new revelation for me. "This study highlights FGF2, a mitogen [a chemical substance that encourages a cell to commence cell division] known to protect the auditory nerve, as a potential tumor-secreted mediator of hearing protection in VS."

It's good to have a researcher on the forums.

Yesterday I was reading a paper to increase my knowledge about nerves that pass through the internal auditory canal ( ). Interesting aspect, of no practical use, is that the cochlear nerve has about 25,000 individual nerve fibres each with their own insulation generated from our favorite cell, the schwann cell. That's 25,000 separate channels of information conveyed from the cochlear to the brainstem.

I'm beginning to examine the hypothesis that hearing loss may be dependent on which nerve the tumor is growing on. For instance, I have a large tumor with little hearing loss, but altered taste. So little hearing deficit, but more than average facial nerve deficit (taste). If the tumor is growing on the superior vestibular nerve, it would be in contact with the facial nerve, but not the cochlear nerve. Perhaps this explains my situation. Conversely, if the tumor is on the inferior vestibular nerve, which most are, it would be contact with the cochlear nerve therefore more hearing loss (through mass effect or ototoxicity).

Let's hope the medical community start coming up with some consistent knowledge (and techniques) on how to help us.
Title: Re: Continued hearing loss years after radiation
Post by: PaulW on July 04, 2017, 02:36:07 pm
ANSydney... next time I am in Sydney or you are in Adelaide we should catch up for lunch and compare notes... Must be something in the water here in Australia to do lots of research..
Or is it just the complete vacuum of decent information available in Australia that drives us to do this.

Check out this paper here

As discussed there are so many factors that could cause hearing loss..
My gut feel is that there could be a subset of patients that could benefit from radiosurgery for hearing preservation. Unfortunately we really don't have studies, with more granular detail to make a judgement. Mind you that could be the very same subset that perform well in W&W too.

Title: Re: Continued hearing loss years after radiation
Post by: ANSydney on July 04, 2017, 07:22:18 pm
Hi Paul, it would be great to meet up when you're next in Sydney. I've only been to Adelaide once, a few decades ago. Actually it was to Murray Bridge, but we did pop over to Adelaide and the Barossa Valley.

I'll have a good look at my copy of the paper when I get home tonight. My copies are useful to me as I make notes on the paper about interesting findings. Reading the abstract, it does sound like gamma knife is the best thing since sliced bread.

Geographic location is an interesting subject. The following are for tumors up to 3 cm in diameter and are based on where you live. If you live in Los Angeles, there is a 55% chance of surgery, 25% chance of radiation and 20% chance of observation. If you live in Hawaii then you have a 15% chance of surgery , 30% chance of radiosurgery and 55% chance of observation.

These figures are from

If you live in Denmark or parts of England, then for a 2 cm or less sized tumor, 95% are observed.

So clearly the water where you live is the most important factor for treatment modality!

From the abovementioned paper "Despite a lack of compelling evidence supporting one treatment modality over others, many providers and institutions remain highly biased toward one particular therapy-microsurgery, radiation, or primary observation." and "Until there is clear evidence supporting one therapy over others, multidisciplinary consultation with a minimum of a neurotologist, neurosurgeon, and radiation oncologist or radiosurgeon should be offered in order to provide balanced counseling and accurate informed consent." Who do you see that is biased towards observation to get a complete picture?

Nobody can even answer the most fundamental question of what percentage of tumors grow? What have we been doing for the past 100 years?

By the way, regarding treatment options the best are robotics for microsurgery and MRI guided focused ultrasound for non-invasive surgery and objective measures for observation. We just have to wait another 5 to 10 years for the first two, which should only be done after a 2 year trial (5 MRIs) with intervention for select few cases where there is rapid growth threatening to exceed 3 cm or objective symptom progression. Given the known biases, the patient should be able to personally measure growth profile (do not rely on radiologist as they got my measurements completely wrong) and objectively record symptom progression (do not rely on memory).
Title: Re: Continued hearing loss years after radiation
Post by: ANSydney on July 04, 2017, 09:20:37 pm
MRI and CT have only been available since the 1970's. So size measurements have only been possible for the last ~40 years. So change that 100 years to 40 years. (Although the natural incidence in the population, through cadaver examination, could have been known 100 years ago.)
Title: Re: Continued hearing loss years after radiation
Post by: ANSydney on July 05, 2017, 05:14:23 pm
I've started re-reading the paper. It's long at 16 pages. Unfortunately the Kaplan-Meier plots for hearing loss (Fig. 5) do not provide the at risk numbers, which would be interesting to know in the later years. They report a very impressive 97.1% tumor control rate. However "Tumor control was defined as no need for further surgical or radiosurgical intervention after primary GKRS treatment". This is a lot easier to achieve than a no-growth criteria.

This paper was queried in a letter at and stood up pretty well to scrutiny. There is also reference in the query to the paper at . So three sets of papers or letters to process. I hope to read them all again over the next few days.