Wednesday, December 10, 2014

Hearing Loss & Depression

I went to see a specialist at the New York Eye and Ear Infirmary to discuss my hearing loss. I waited two weeks to get the appointment and was in limbo in the meantime. I haven't listed, I haven't thrifted and the only things I did were mail eBay orders and place more on-line.

My hope was a series of medications or an operation would work a miracle but nope. The hairs inside my inner ear, which transmit sound, are dead and there just isn't any way of regenerating them. I have idiopathic ssnhl. 4000 reported cases in the US. 75% get better on their own within weeks or in response to medical treatment. I fall in the other 25% which means I am one of approximately 1000 people in the US with this.

Its overwhelming.

I need to get a cochlear implant in order to transmit sound from my deaf left ear to the right normal ear. The ENT had a working model which he attached to the outside of my head so I could try it out. The sound was mechanical and reminded me of recording tapes off the radio as a kid. I won't be able to determine where sound is coming from anymore. Normally ears work in conjunction to determine direction but with only one ear on duty all sounds will continue to be omni. The only time I can successfully determine where a sound is coming from is when its my own footsteps directly beneath me.

All that pain and pressure I've been experiencing? He described it as me "experiencing my hearing loss." I'm in pain because my hearing is dying.

and all that humming and tinnitis? I was reading Shouting Won't Help: Why I--and 50 Million Other Americans--Can't Hear You the author describes them as phantom sounds. The brain is so accustomed to receiving audio input from the ear that it creates its own sounds to compensate for the missing ones. Its akin to hearing sounds in your dreams - the audio cues aren't there but your brain will supply them anyway.

So I have a few next steps to determine what type of implant I will need. Unfortunately these offices are in NY and apparently very busy because I'm voice mailing left and right. The only appointment I've successfully set up was with the Ear Institute on January 2nd to take another two hours hearing test.

Its overwhelming and I'm sad and crying a lot. I'm still in pain and bewildered this happened. I don't know if skipping Loser ENT would have afforded me earlier treatment and I would have responded. Idiopathic means there isn't an explanation for why it happened - I'm healthy without head trauma, funky meds, exposure to loud noises, hereditary compulsion, tumors, autoimmune disease or any other reason for it.

I'm grateful for the chance to get an implant and at least simulate hearing but it will never be normal and I would have rather not lost it at all.


Cora said...

Hi Anny. I know I haven't commented here before, but I have been reading for awhile and I really enjoy your blog. I am so sorry for all you are going through. I get the depression and feeling of being overwhelmed when something so unfair happens for no reason at all. I know exactly what you mean.

It's not the same thing as your experience, but ten years ago I woke up one morning and was shocked to realize I couldn't control my legs anymore. I fell to the floor and couldn't walk and had absolutely no sense of balance. Soooooo scary!

I was taken to the ER where they found a huge blood clot inside my spinal cord which was blocking my brain from communicating with my legs. I was only 32 and couldn't grasp how something like that could happen to me out of nowhere for no reason at all.

Long story short, I had to have surgery and lost the ability to walk. I had to re-learn how to walk and take care of myself in physical therapy and I eventually got my independence back, but it was a long and frustrating road. I am still numb on the right side of my body and that is something I will have to live with forever. But it's okay. Really. I'm so used to it now that I hardly think about it anymore and life just goes on.

Things won't ever be the same, and I know that stinks, but I promise you you will eventually find a new normal. It's healthy to mourn the loss. It's an important part of the process. You have every right to be sad and pissed off and anything else you are feeling. Just know that you won't be feeling this way forever. Things will feel bright again, I swear. :-)

Kimberly Hutmacher said...

Anny, I am so sorry this is happening. I'm praying for pain relief for you (both physical and emotional)and for wisdom for you and your doctors as you make important decisions.

Margaret said...

So sorry about this Anny. I'm praying for a quick resolution and recovery for you.

Diana Petrillo said...

Anny, I am so sorry to hear about the pain and loss you are suffering through. I've said a prayer and will continue to do so as you come to my mind.