Downward Spiral

NQR -- Sorry to hear you've joined the club where no one wants to be a member. Hearing loss (particularly in the lower frequencies) is often part of the progression of Meniere's, but the pace of loss seems to vary among people. My hearing degraded over 17 years until there was "no useable hearing" -- that is, word recognition score was zero on that side. At the time (last year) I was having multiple disabling vertigo attacks a week, and it was no way to live. I opted for labyrinthectomy surgery. No regrets -- a challenging brain re-training recovery period, and it has let me live a fulfilling and fearless life again.

One-sided hearing loss does not affect your life at all like the random vertigo attacks and the fear of when the next one may occur. The biggest problem with one-sided hearing loss is the inability to determine where sounds come from. This makes it harder to separate conversations from background noise, and really impossible to figure out which smoke alarm in the house is giving the low-battery beep. Still, that's not a difficult trade-off to be vertigo-free. There are devices that can help you to hear on your deaf side -- CROS hearing aids and BAHA implants, etc. Many people like the CROS hearing aids (essentially a mic in the bad ear that bluetooths to a receiver in the good ear). I opted to have a BAHA (bone-anchored hearing aid) implanted along with my labyrinthectomy. The implant holds a mic on the bad side and transmits sound vibrations through the skull to the good side, where the normal ear is the receiver. It's not the bee's knees of hearing, and the jury is out on whether it's worth drilling an extra hole in the skull, but it has been helpful for me.

Try to find a neurotologist or otoneurologist -- both are doctors who specialize in the brain/ear connection, which is where Meniere's makes its home. A neurotologist is an ENT subspecialty, and an otoneurologist is a neurologist who specializes in inner ear issues. A regular ENT doesn't usually have training on the inner ear or brain connection piece, but should be able to get you an MRI to rule out other causes for the symptoms (tumor, neuroma, etc.) and refer you accordingly. Audiologists can monitor hearing loss, advise on hearing aids (by law you get to try any hearing aid for 30 days before purchasing), and also do more testing on balance and vestibular function. Those tests are important if you get to the point of considering destructive treatments (gentamicin, labyrinthectomy) that take out the vestibular system.

This forum is a great resource. The antidote to fear is information, and there are lots of people here who can give their perspectives on living with MD. Be curious; ask lots of questions. Good luck.

 

I would respectfully disagree in that one-sided hearing loss DOES affect your life. No, if it's not associated with vertigo it's not as bad, but it IS bad. As a musician, there are so many things I would trade to have stereo hearing again. no disrespect meant, just a different point of view.

 

I have had one sided hearing loss for 22 years. I would love to be able to echolocate again. I am not a musician. It is hard to hear in restaurants or when someone sits right down by my deaf side and speaks softly in my deaf ear and i dont hear a thing. But that said, after a few months of accepting these losses, it was no biggie for me. It does mean there is no spare, not ideal, but i managed when i got ch in the good ear 12 years ago to handle that with anti virals.

 

You're right, Kevin -- hearing loss absolutely does affect your life. My point is that to me the hearing loss was not as devastating as the incapacitating vertigo that kept me housebound for months with bucket in hand. I grieve the hearing loss while at the same time realize I can have a full but different life. My daughter is an oboe player and guitarist, my mother was a pianist, and throughout the years I have appreciated all kinds of music. Years ago certain frequencies and sounds became abrasive to my ear in an almost physical way, and many types of music became intolerable to listen to. Laby surgery didn't change that; it's something I accept as a tradeoff for being able to live free of vertigo.

 

FWIW
I had the same issues with distortion and the physical discomfort of certain pitches. Antivirals fixed that.

 

Not Quite Right,

I think it is very different for most people, and I don't want to sound like a downer, but you can likely bet on your hearing going eventually in the affected ear(s). Just at what speed does it vanish?
For me the hearing loss is secondary to the sounds that are replacing it. Ringing, buzzing, terrible reaction to sounds.
I have gone 16 years without seeing a Dr. for this.
I did see a ENT specialist for 18 months before that and had several hearing tests.
I quit going (Dr. was unwilling to do anything, as was I) until recently when I had my first vertigo attack, and my hearing suddenly went south.
In fact I have not even been diagnosed yet, although it should be an easy one for the Dr. My hearing test this week showed moderate to severe hearing loss on the right only. Left is perfect.
My first Dr. appt. is in July. I likely would not have even called if not for the vertigo.

I am sad to hear Clare reporting that the abrasive sounds are not cured by the Laby surgery.
That is my #2 symptom I would like to see go.

Jim

 

Hello NQR, thanks for sharing your story. For me my hearing was already diminished somewhat in my affected ear from a ear infection that I didn't take care of when I was younger. When my symptoms started the fullness and tinnitus further diminished hearing in my affected ear. I started taking Antivirals about two years ago and the hearing I have left in that ear has stabilized, meaning no loss in the last two hearing tests that I've had. I can still hear somewhat lower and middle frequencies are much less but I can still hear music when I listen with headphones. I attribute the stabilization to AV's and JOH regiment.