Increasing muffling mean one time hearing won't come back?

[Notanotherthing]

I'm a W&W. I keep having an increase in the muffling episodes where it's like you're hearing goes out and then it comes back. Of interest today, I was bending over to comb my hair upside down and it caused the hearing to muffle on the AN side from the action of bending over. 

I can see the nerve is irritated, as my balance issues are a bit worse... so it makes you wonder if your tumor is actively growing or will one time the hearing just muffle & simply not return?  I guess maybe you want to know what to expect if you're hearing is going.  Was this a precursor to sudden hearing loss.....

[ANSydney]

Hi Notanotherthing, interesting observation about your hearing.

I get a pulsing sound, that is probably synchronized to my heart rate, when I sometimes change altitude like going up an escalator. At first I thought that there was actually a pulsing sound, but have more recently decided it is background noise turning hearing off and on. Once it starts, it's all over in about a minute. The change in air pressure theory is still under consideration.

Likewise, when you change your head-to-heart vertical distance relationship, there would be a time when the blood pressure in your head changes.

Have you been having regular MRI's (every 6 months in the first 2 years) while on W&W?

How long does your muffling episode last for and does it pulsate?

Hearing deterioration, if I think about it, may be because of:
1) Growing tumor
2) Stable tumor continually squeezing on cochlear nerve or blood vessels
3) Stable tumor releasing toxins

Some of hearing decline is just due to getting older with presbycusis progressing at a rate of about 0.6 dB per year once you reach about 50 years old.

The tried and tested best way of accelerating hearing loss is to have surgery or radiosurgery. If you want to keep your hearing for as long as possible, conservative management is the way to go. ( https://pdfs.semanticscholar.org/2cef/abe8e8eef1ae32cab8bcf3c71dd75f53387c.pdf ).

[Notanotherthing]

Thank you for your great answer. I hate that I had that little bit of fear that I was losing my hearing. I have the normal constant loud tinnitus. I get noises like a high-pitched electronic beep that will go on for seconds like the old TV signal when your first turned it on in the morning before the station was up and running. I get chirps like a little bird.   One thing that has happened to me for years that's really odd is if I talk on the phone with the phone on my good ear I will always here like a thunk in step with the persons voice like an echo but it's a thump. In my AN ear. I cannot stand this sound so I always put the phone on my AN ear so I don't hear the thump. I have become now reliant on speaker phone so I just don't have to put a phone to my ears.  Now there is NO hole in your head (maybe I do have one lol) or direct connection from the right ear nerve to the left ear however when I put the phone up to that good ear I will hear the swishing/thump sound in that other ear.  Dr told me that's impossible. Of course.

I totally do not want it out. But, it does cause me issues. Pitching to the side of my tumor unexpectedly & almost falling, the noises, the earache. New is I get a face tingling now & then. But I truly do not let these things bother me because I know why it happens & I can live with them. And indeed, it could be irritation from toxins. It is so interesting how I caused a "positional muffle".

I get an MRI every 6 mos. to a year & hearing tested.

Thanks again for your great answer. Xox

[ANSydney]

Notanotherthing, more interesting aspects.

Firstly, its great that you can use your AN ear for the telephone. It means hearing has not declined too much. Do you know your PTA (pure tone average) and WRS (word discrimination score)?

As you know, tinnitus and other sounds-that-are-not-really-there are not improved by surgery or radiosurgery.

If your symptoms are mild (and your tumor is small) there is no reason for intervention.

The AN ear "thumping" when the non-AN ear is using the telephone is baffling. As you've said, there is no link between the two. (Bone conduction is only about -30 dB between ears so it very small. See http://audiometry.sydneyinstitute.wikispaces.net/furthertesting for more details.) I wonder what your audiologist thinks about the "thumping" sounds.

There's a pure tone generator at http://newt.phys.unsw.edu.au/jw/hearing.html . Maybe playing around with different frequencies and amplitudes will tell you more about what is happening. Also, pay attention to when your change heights (changing air pressure) and whether this correlates with anything. With some effort, this one should be solved!

[bethtretrault]

That used to happen to me pre-retrosigmoid. I'd be in a meeting and suddenly all noises would be muffled and then full hearing would return. This would happen every few months for about 1.5 years. I then had surgery (I had other symptoms as well) and did lose some hearing in the AN ear as a result but have not had muffling episodes since the surgery. I don't think it is a good thing but your MD will know.

[ANSydney]

bethtretrault, would you say the pre-surgery "suddenly all noises would be muffled and then full hearing would return" is better or worse than the post-surgery "lose some hearing in the AN ear as a result but have not had muffling episodes since the surgery"?

[JLR]

I had AN surgery. Lost hearing right side. Still have tinnitus and it's very loud at time. Once in a while I actually get startled as I get a very loud bee like sound. Surgeon said its coming from brain and will eventually go away. But he also said I'd be driving 2 weeks after surgery - I'm now into my 6 th month and still not driving!!!!!! Joan

[alabamajane]

Yeah Joan, I wouldn't expect the tinnitus to go away ,, unfortunately,,  the bee like sound might ,,,
He's right in that it's a brain thing but for most of us,, it doesn't go away,,,, 

Sorry,,, hope you are able to drive soon though !!

[bethtretrault]

Hi ANSydney. For me I am glad the surgery is behind me and am fortunate to have some hearing in the AN ear. So for me, yes, I'd rather have reduced hearing in that ear permanently and not have to wonder what is next. I was in W&W for almost 2 years until it started to grow and I had more vertigo. If there were fewer symptoms I might still be watch and wait.Everyone is different and so many factors play into the decision making.It really is a personal decision.

[ANSydney]

beth,

I'm glad you did a trial of 2 years wait and watch.

It's always a gamble. Loose hearing now and risk facial nerve damage preventing blinking but probably be otherwise better off OR keep hearing for as long as possible but maybe get other problems or more difficult surgery. For me, the gamble is for the later.

I think the big one is loosing ability to blink that most steers me towards W&W.

[alabamajane]

There  are many patients who have surgery and do not have residual problems and go on with their lives and never post again. In fact, there are many AN patients who never post in the first place. So you can't take the representation on this site as " what will happen " with surgery or for that matter radiation, or even w&w.
 What you see here are just those of us who take the time to share our experiences in the hope it gives others some comfort in the fact they are not alone out there.

No one can guarantee any outcome,, especially those of us on here. Your doctor and perhaps another for a second opinion,  will give you the best understanding of risks and assessments pertinent to your case.

[ReginaE]

Hi, I am new to this site.  I am in W&W as well.  I have a 1CM AN on my left side.   My job is being on the phone and I have been using my right ear to hear and have the volume up as high as it will go.  I am in an open concept room with 30 other people talking all at the same time.   I have the muffling and ringing as well.  I seem to have to ask my customer's to repeat pertinant information with all the background noise.  This is so stressful that at the end of the day, I have a headache.   My last hearing test showed a big decline in my left ear.   I have another hearing test in a week.  Is anyone else having issues with background noise as well.

[EricC]

My tumor is on my cochlea itself so it might be small but my hearing is shot.  Fullness was my first symptom.  Everything was a bit muffled, I thought I had some weird head cold.  The "pulsating sound" was my next clue.  It was most noticeable in the shower.  It was definitely in sync with my blood flow (whump whump whump...).  Bending over (altitude changes) would make it worse.  I then started getting the "electronic beeps".  I described it as the sound of an old modem from the 90s.  Occasionally I would notice my hearing would get really good (there would be an "airplane pop".  It would go away after a few hours.  Its definitely not progressive but more of a one step forward, two steps back type loss. 

Background noise is the death of me.  I cannot hear anything in a restaurant.  I constantly ask people to repeat themselves and often just fake it and nod when people talk to me. 

After several years, I now have a low grade constant tinnitus and fullness which is occasionally painful.  I also have slight tinitus in my good ear.  I dropped from a PTA of 70dB to 80dB in the last year.