Shocked -- lost more hearing

[ampeep]

Yesterday, I was at a lunch gathering at work with about 30 people.  Was sitting at a long table with people on either side & across me.  I could hear the people to my right (AN side), but for the first time had no idea what they were saying!  I tried turning to face them, but with only partial success.  I know that hearing can be affected by AN but was still shocked.

I've been into good sounding stereo systems for years and have always been careful w/ my hearing.  Used ear plugs whenever I'd get together with friends to play rock music.

I have very good etymotic earphones and a dedicated headphone amp that provided excellent sound; I'd often get lost in the music.  However, since my diagnosis, I quit using all of my headphones because I felt my hearing would be gone so I should get used to it.  Ironically, etymotic is Chicago-based company that also makes hearing aids!

Within the past month, started using my junker/cheaper headphones but not the etymotics.  In a way, I'm afraid to hear what they'll sound like now.

However, I am thankful that I had good hearing for most of my 61 years & that I'm still around to enjoy life.

[Echo]

I don't think we are ever prepared to lose our hearing even when we know it is likely to happen. I have been slowly losing mine but it has remained serviceable.  Lately (6 months post Gamma) I've run into some issues where I have a few days here and there where I feel pretty strong pressure in my ear and on those days my hearing is almost nil. Then it bounces back to what I consider my new normal.  When it is almost nil, it is very disturbing and hard to get used to.

I was out grocery shopping the other day and asked for something at the deli counter.  I turned away to look at something while waiting for my order.  The woman serving my order asked me something but because I was looking away I didn't hear her.  Next thing I know the woman beside me is tugging on my jacket and pointing to the woman trying to speak to me.  First time that's happened!!

I just keep telling myself things could always be worse, and I am grateful they are not.

Cathie

[arizonajack]

Yesterday, I was at a lunch gathering at work with about 30 people.  Was sitting at a long table with people on either side & across me.  I could hear the people to my right (AN side), but for the first time had no idea what they were saying!  I tried turning to face them, but with only partial success.  I know that hearing can be affected by AN but was still shocked.

Time for you to start looking into hearing aids.

A lot of us have had good luck with Phonak products but there are other good brands, too.

[ampeep]

Cathie, I can totally relate to that situation!  How's your balance coming along?  I've started using my Wii Fit for the balance exercises - seems to help.

arizonajack, thought we're supposed to wait a couple of years for the hearing to stabilize?  Or is that incorrect?

Keith

[Syl]

arizonajack, thought we're supposed to wait a couple of years for the hearing to stabilize?  Or is that incorrect?

Keith

Keith,

I don't know if it takes the hearing time to stabilize of if it's the brain that takes time to adapt.
I had sudden hearing loss in June 2007. The noise in my ear drove me crazy for a long time. Most sounds were distorted so I dealt with this by plugging my AN ear with a cotton ball.

My surgery was 1 year later & I lost even more of my hearing then. It drove me craze not being able to recognize sounds that were supposed to be familiar. It didn't help that I had lost directionality. It was hard to tell if sounds were coming from the TV or from outside.

It's almost 7 years since my initial hearing loss. I don't know how long it has taken, but my brain has adapted. I can recognize many sounds that had become unfamiliar after my hearing loss. I can tell when the mailman is opening my mail box now. That used to be scary for me.

I got my hearing aid 6 months after my surgery. My Dr told me it wouldn't help, but I got it anyway. She was right about it not helping with conversations. My useable hearing post-surgery was at 20%. What no one told me is that it can work wonders for directionality & it helps soothe the tinnitus--so long as I keep it in background mode. It functions as a filter for me. I wear it most of the time. I'm not comfortable without it because there are so many sounds that get distorted.

Syl

[Echo]

Hi Keith,

My balance issues are ongoing, very slow to improve but thankfully not getting worse.  My ocular motor issues seem to be the bigger problem right now, but they will take time as well.  Both issues are annoying but they are manageable.

I was actually at my audiologist yesterday and had another hearing test before my next MRI.  The hearing in my good ear had lost some high tones due to aging and overall my hearing had decreased when diagnosed, but the good news is that it has not really decreased any further since my diagnosis in May 2012 or since my Gamma treatment this past September.  What has changed is my word discrimination.  The AN is doing what it does best I guess, and that is making my current hearing "fuzzy".  When I was diagnosed my word discrimination was at 70%.  One year later, May 2013 it was at 40% and yesterday it landed in at 20%.   (My AN grew primarily within the CPA with the tail at the end of the IAC, which probably explains why my hearing has not completely disappeared yet.)

As my word discrimination has decreased and I am loosing some hearing in my good ear, I decided to join the Phonak club now rather than wait any longer.   I highly doubt my word discrimination will improve on it's own. I should receive my Phonak BiCros within a few weeks. I'll keep you posted on how this goes, but hopefully it will improve my day to day living.

Hope your Wii Fit continues to help! Sounds like it could also be fun.

Cathie.

[ampeep]

Hi Syl, thanks for sharing your experiences!  Was curious about your statement that sounds became unfamiliar after your hearing loss; can you describe how these sounds changed?

One thing I'm hoping to retain is directionality, so I can tell if a car is coming up from behind when we're walking our dogs.   



Hi Cathie, good to hear that your balance are slowly improving.  My Wii Fit said it had been 547 days since I last visited!

I'd always thought if you lost your hearing, everything would go!  Had no idea that you could hear things, but not be able to "discriminate" words.   Like someone speaking a foreign language, eh?

Good luck with your Phonak!  May need a hearing aid in the future....


Yesterday, my tinnitis got much louder than ever been before, and a full-ear feeling.  This morning, my hearing seems to have decreased by about half.  I know this could happen, but am still feeling a bit distressed about it.


Appreciate all of your input; it really helps to hear others' experiences.
Keith

[Syl]

Hi Syl, thanks for sharing your experiences!  Was curious about your statement that sounds became unfamiliar after your hearing loss; can you describe how these sounds changed?

Keith

I didn't recognize sounds such as: the garbage bin being rolled out to the street; the sound of my mailbox being opened by the mailman; dishes in the sink clanging against each other; a car door being shut; or a window being opened or closed. These are all sounds that pre-AN had been a part of everyday life--I never had to think twice about them. After my hearing loss, I just couldn't tell what they were anymore. When I heard a sound, I had to go investigate what it was or ask anyone around me what that was. They had become sounds that my brain had to learn to recognize again. It drove me crazy!

Syl

[ampeep]

Hi Syl,

Was curious, did you hear these weird sounds in your good ear, or was it because of the distorted sounds from you AN ear?

I know that sometimes when my hearing is better, I can hear more distorted sounds from my AN side.
 
Keith

[Syl]

Keith,

It was the distorted sounds in my AN ear.

Syl

[ampeep]

Might be a dumb question, but does your hearing aid help cut down on distorted sounds?  Or just amplify the distortion?

[Syl]

My hearing aid has 2 settings: outdoor & indoor. Indoor is for conversations & outdoor is for, well, outdoors. The indoor setting is pretty useless for me since my useable hearing is shot, making conversations just a bunch of noise that only gets amplified with this setting.

In the outdoor setting, conversations are filtered out. This setting helps me with directionality when I'm out and about. If I go for a walk, I can tell where cars or dogs are.

The outdoor setting is the one I use all the time.

Syl   

[ampeep]

Appears that hearing aids are very useful even if cannot discriminate the words.  So much about them that I had no idea!

This morning when I was putting on my car cover, I heard this weird crackling sound in my good ear.  Had never heard that before...  Getting more experience with these unrecognizable sounds.

[ampeep]

After my original post, my hearing returned to my pre-GK levels & things seemed to be going smoothly.

However, yesterday evening my tinnitus got a whole lot louder, hearing got way worse AND I got really dizzy.  Experienced this while out walking our dogs.  Hoped it would be better this morning, but no change so I stayed home from work - couldn't trust myself to drive.  Called my neurosurgeon & spoke to his PA - could push up my MRI at 4 months rather than 6 months but didn't really want to do that.  He said there was only 1 other GK patient that had experienced dizziness.  He asked if I could bear with the symptoms & will check back with me later this week.

In the meantime, I started on some of the vestibular therapy exercises, and for the few times I've done them, they seem to help.