Hearing loss after Cyberknife

[Anne S B]

Does anyone share my problem?  Before Cyberknife surgery August 2013 I had 90% hearing in my affected ear.  After surgery my hearing is not functional in that ear.  The surgery was a success (necrosis in 75% of my tumor) but I am still adjusting to my hearing loss.  Today the doctor informed me of a new device that is different than the Baha.  This new device is covered by insurance and does not require surgery.  It involves an implant in the ear, along with a tooth mounted receiver.  I can't remember what it was called, but when I looked at it the mouth piece looked gruesome.  Does anyone have any experience with this?  How does everyone else cope with this unwanted side effect of Cyberknife. I would welcome any advice.

[PaulW]

How long since you have lost your hearing?
My hearing fluctuated post cyberknife.
I lost my hearing twice post cyberknife and twice it came back.
About 50% returned within 2 weeks and the rest took about 4 months.
Some doctors believe steroid treatment maybe useful if started within 48 hours or at the latest 10 days after hearing loss
Acoustic neuromas can make us deaf at any time

My theory is that radiation speeds up whatever problems you were already going to get. But after 2-3 years that' normally marks the end of most of the symptoms.

[Echo]

Hi Anne,

Is the tooth mounted receiver your talking about called the Soundbite?  I have heard of that hearing system, but honestly do not know much about it.  Many people here use the Phonak BiCros with good results. With the Phonak you wear the hearing aid in your good ear and a receiver in your AN ear.  The receiver will pick up sound from your AN side and wirelessly transmit the sound to your good ear.  It might be worth looking into if you want an option that does not require surgery.

I had Gamma Knife and still have usable hearing as far as overall tones go.  My difficulty is with word recognition.  My word recognition has dropped from 40% one year ago to 20% currently.  I am coming up 6 months post Gamma.  I've had two episodes within the last 2 months where I have lost most of my hearing for one day while experiencing major pressure in the ear and then I go immediately back to normal when the pressure clears. 

Take care,
Cathie.

 

[TJ]

I am about 3 1/2 past CK and I have also lost most hearing on the AN side.  As Mark indicated, is certainly can be caused by the CK itself, and the AN can pretty much do what it wants.  At each hearing test I show a little more hearing is lost.  I do hope that it will bottom out, but I this point I don't think the hearing is going to come back.

For now I have hearing aids on both sides, but if I do lose more on the AN side I am not sure that hearing aid will help anymore. 

TJ

[chloes mema]

Hi Anne
I had CK in May 2012.  At that time the neurotologist (sp?) told me I'd most likely loose all my hearing in my "bad" ear within two years and he was right!  All word comprehension is gone but I can still hear noise / sounds.  I've also developed "recruitment" in that ear which is when sounds get magnified; for me they actually hurt my ear so I wear ear plugs a lot.

When I'm not wearing ear plugs, I wear Phonak Cros hearing aids.

Karen   

[rodneyd]

Hi Anne,

I was diagnosed with a 9 mm AN in my left ear last fall.  First I just wanted to get the AN out so scheduled surgery.  After further consideration, I decided to have CK treatment.  However, after consulting with the radiologist (I know this is not the right title, but it seems to fit the situation), I was told that because the cochlea is so close to my AN, the radiation would damage the cilia inside the cochlea and I would lose the hearing in that ear within 2 - 6 months. 
Currently, my hearing is pretty good in the AN ear, my major issue is with balance, but I have learned to deal with it and decided not to have the CK yet either.  The key question I asked myself was:  "why am I doing this to myself for a slow growing AN that so far has only affected my balance?"  My answer was, "I shouldn't" and the radiologist concurred that she would be comfortable if I waited a year or two, so I am now in the W & W category.
The point is, no matter how well targeted the radiation is, if the cochlea is very close to the AN, it will also receive a smaller radiation dose which may affect it's ability to function properly.
Hope this helps,
Rod     

[Tisha]

If you have decent hearing in your other ear, I sure wouldn't rush to do what your doctor is suggesting.  My non-AN ear has now progressed to severe in all frequencies.  My AN is normal until 2000 db, then it ski slopes from moderate to mod - severe.  I wear HA in both ears that work together for speech in noise and they are wonderful.

If and when (probably when) my hearing in the bad ear becomes profound, I might consider doing the Phonaks bi-cros.  Would love to hear the OP views on that.  But for now, I just bought these and I would like to get at least 3 years out of them!

[rodneyd]

Just returned from a physical with my new general practitioner, and he found significant wax buildup in my AN ear, which he removed.  I was astounded at how much there was.  I am sure this caused some of the hearing loss in my AN ear, but not sure how much.

I told him I use Q-tips every day and he said I may have been just pushing the wax further into the ear canal (the non-AN ear was free of any buildup).  Anyway, I wish some other doctor had picked this up earlier as it has affected my ability to hear properly and I have had to turn the volume on the TV up which my wife doesn't necessarily appreciate. 

Will be attending a meeting of our local (Seattle area) AN chapter on March 30th and providing sputum samples for the Yale survey as well as meeting other AN sufferers.

I feel fortunate that my symptoms have not worsened over the past 6 months and that they are relatively minor compared to some of the other posters on this site. 

Keep up your spirits and good luck to all!

Rod 

[carjon0]

Hi,

I have lost all functional hearing in one ear. The audiologists tried a conventional hearing aid, but hearing aids boost the hearing your ear has, it can't restore hearing that is lost, so I had extremely loud deep noises, clock ticks, but still couldn't hear speech, in fact it was worse because I had to try to hear speech through roaring clocks in some places!

I was given a cross-aid - it's away for repair and I didn't have it long enough to be sure, but it initially helped hugely to be aware of sound on my left side. Without it, I can't hear speech from my left at all.
It works with 2 on the ear aids. The one on my left is a transmitter, sending to the aid on my right ear which sends the sound through a dome inside my right ear.

Articles I've read about single side deafness describe the difficulties with it - loss of direction for sound and clarity in groups being just two.

I do hope you can find something that helps soon..