worried about complete hearing loss

[maryanddavidsmith]

I was diagnosed last summer with a 1.1cm. and have been watch and wait. My doctor saw my 6 months MRI and thinks there may be slight growth.  I've been to radiologist and neurosurgeon.  I have about 50% hearing lost now. I am completely overwhelmed by the possibility of losing all my hearing in that ear.  Can anyone tell me about their experiences of suddenly becoming deaf in one ear?  I  am a bit of a nervous nelly and it is hard for me to adjust to surprises.

Mary

[Tod]

It can be disconcerting and take a while to really get used to, but it being single-side deaf (SSD) is far from the worst thing to happen to me.  By the time I was diagnosed, I lost most of my hearing and was down to less than 10% discrimination. After surgery, all that was gone.

However, a year after surgery I got a BAHA and that helps a lot in many environments. Otherwise I position my body and head to hear as I can. Lots of people end up being SSD without a tumor and they get by, and become quite successful.

-Tod

[arizonajack]

Can anyone tell me about their experiences of suddenly becoming deaf in one ear? 

Here's mine.

It was the middle of December 2011 (ah, distinctly, I remember) that I discovered a substantial loss of hearing in my right ear. Here’s what I mean by discovered. For many years I’ve been using a head set for telephone conversations at work and at home. The receiver was always over my left year so it never occurred to me to see how my right ear was doing. One day I was talking to my friend on the phone and we were getting some static on the line with my cordless phone. I picked up a second phone and held it to my right ear to check for static but all I could hear was the faint, tinny, far away sound of my friend’s voice. It was quite a shock.

At about the same time I started experiencing tinnitus and dry eyes. By February 2012 I was experiencing balancing issues.

I was evaluated by an audiologist. Tests revealed that I'd lost about 90% of my hearing ability in my right ear.

I was provided hearing aids and referred to an ENT who arranged for an MRI which occurred in April 2012 at which time I was diagnosed with an Acoustic Neuroma 3mm x 4mm x 9mm. I elected watch and wait because the tumor was small and my hearing was so far gone that it was never coming back.

By then I had gotten used to my hearing aids.

In October 2012 I had my second MRI. By then I could hear nothing in the right ear and the tumor had grown by about 20% (in 6 months). That's when I decided to kill it. I spent the next couple of months researching the options of radiation or surgery by participating on this site and talking to experts.

I chose radiation and had Gamma Knife in January 2013.

My post GK experience has been relatively uneventful. I have slight tinnitus but the balance issues are pretty much resolved.

If you, like me and Tod, are destined for SSD, you will have no choice but to adjust to it and handle it as best you can.

[PMORRIS]

Here's mine.

On March 10, 2014 my hearing was as usual but with some "stuffiness" in my ear.  Started getting dizzy that day and progressed to vertigo.  On March 11, I could hear nothing in that ear.  Audiogram at ENT's office showed total loss in my right ear.  Diagnosed as sudden hearing loss and began regimen of steroids but little hope was given me of getting hearing back.  Within another day, started having double vision and ENT ordered an MRI which showed a 2.5mmx4.5mm AN.  On March 26, I saw a doctor at Vanderbilt who totally recommended wait and watch for me, which I was thrilled to hear, but he said he was glad I didn't want surgery because he wanted to work on getting some hearing back for me.  The audiogram I had at Vanderbilt showed a slight improvement from the one two weeks earlier.  I had a tiny bit of response in a certain range in my deaf ear, although nothing useable.  I received a steroid injection into my middle ear that would be absorbed into the inner ear through the round window and put on a high oral dose of prednisone for two weeks.  Going back to Vanderbilt in a month for another audiogram.  If there is further improvement I will get the treatment again.  It may not happen, but I am so glad to pursue any chance of hearing better.  SSD is so definitely not the worst thing in the world, and compared with the health issues others around me are facing, I feel blessed that this is all I'm dealing with.

[joanna_an]

There are solutions.. Like a cochlear implant or in 5 to 10 years stem cell therapy.. I was discussing this with my radiation oncologist. Even if you do lose your hearing there are ways to fix it. But you have to be careful what treatment you choose. If you choose surgery and cut your nerve out plus other things in there those solutions will not help you anymore. And that's one of the reasons I chose radiation. I want my hearing back and if this treatment works I'll see that it happens.

[Syl]

Mary,

I sneezed & my hearing went from normal/good to about 60% in an instant. After surgery I lost even more. My word recognition was at 20% after surgery. I wear a hearing aid to help with directionality & to sooth my tinnitus.

It's a big adjustment, but I have learned to deal with it.

Syl

[chloes mema]

I started losing my hearing in "big chunks" and it felt like there was a plug in my bad ear; if they'd only take the plug out I could hear.  Well, all this clued my ENT into ordering an MRI which proved I had an AN.

When I decided on CK the neurotologist flat out said, "you'll probably be SSD within two years.".  He was pretty much on the money. 

I wear Phonak Cros hearing aid which I do very well with.  No it's not perfect and in certain situations like church and restaurants I do have trouble hearing but for the most part it works well.  Actually, I don't think of myself as not being able to hear so every once in a while I cover up my good ear just to check if I can hear anything with my bad ear, NOT!  My last hearing test showed that my word comprehension in my bad ear is down to 4% which my audiologist said was understanding one word.  I said it was probably a lucky guess because I couldn't understand any of the words.  I know someone is speaking but I can't understand a thing.

As my hearing was fading I just started switching the phone to my right ear and I still put both ear buds in when I listen to my iPod and life just goes on.

As others have said, there are all sorts of options you just need to study them & decide what is best for you.

Karen

[maryanddavidsmith]

Thank you all for responding.  I have been struggling.  I have 50% hearing still but it is not very effective in my preschool classroom. I guess I have been denying that I have an AN since this is my only symptom. I had a follow up check up after my second MRI and they are talking about either radiation or surgery.  I was devastated when the surgeon said  I would lose complete hearing.  I felt resentful. 

Mary

[v357139]

.  I have about 50% hearing lost now. I am completely overwhelmed by the possibility of losing all my hearing in that ear.  Can anyone tell me about their experiences of suddenly becoming deaf in one ear?  I  am a bit of a nervous nelly and it is hard for me to adjust to surprises.

Mary

I started with 65% hearing and lost it all over time.  In retrospect, for me it was a small consideration in the AN scheme of things.  I took months to come to grips with it, but I did.  I lost all hearing in that ear, but honestly I barely miss it.

[LakeErie]

I had a large tumor and no chance of saving any hearing. The main problem for me is the inability  to locate sounds. If I am in a parking lot for example and I hear a car start, I have to scan the area to see where the car is. Otherwise I don't know where it is, in front of me, behind? If someone calls me in a store or outside, I have no idea where the voice is coming from. Other wise I have the same trouble all SSD people have, difficulty hearing in a noisy environment, or hearing higher pitched sounds regardless of direction. I have not found it bad enough to even consider a hearing aid of any type. Good luck

[PaulW]

I lost some of my hearing suddenly, More disappeared over the next two months.
I then had Cyberknife and more went in the next few days.
Slowly it improved, and went back to almost perfect...
Over the last 4 years I have had a few bouts of sudden hearing loss, most recently 3 months ago.
Each time my hearing slowly came back taking upto 6 months.

At the moment my hearing is considered normal.....Its not what it was.... but very thankful that its still OK.
While my hearing is down the audiologist said it was too good for a hearing aid..
 

[james e]

Funny story how I learned I was hard of hearing...We have an African gray parrot and he mimics what we frequently say, and grays can mimic voices and sound exactly like a who they are mimicking. I noticed he was always saying in my voice, "What did you say?"

I agree with Tod, it's not the end of the world. I have a BAHA and it makes my life better.  I miss stereo hearing but so what! I am very careful with my good ear...wear ear muffs when I cut the grass, go to the shooting range.

My balance issues far outweigh being SSD. If I could chose between the two, I would rather be SSD than have the balance problems...but you don't get to chose. I'm sure SSD will not overwhelm you.

James