Why are you deaf?

DeafRaptor

Member
I have progressive moderate (lower frequencies) to profound (higher frequencies) sensorineural hearing loss in my left ear & progressive moderately-severe (lower frequencies) to 100% deaf (higher frequencies) sensorineural hearing loss in my right ear that is congenital. It was due to my genetics and complications at birth. I am a twin and we were born about a month premature. I was in breech position (they had to make my father leave and put my mother out, so there is some we don't know), I had my cord around my neck and loss of oxygen, and I had jaundice, all of which has been connected to hearing loss.

I believe God gave me grace in giving me hearing loss. I have hyperacusis which is painful when hearing sounds with my hearing aids but fine without. A lot of times it seems people develop it and have normal if not better hearing and therefore cannot get the relief I can. One of the only treatments I have heard of is very long (can easily take years), involves exposure to some noise (while adjusted so that it is more tolerable and it progresses slowly, can still be uncomfortable and sounds somewhat torturous to me), and only partially works and not for everyone. I could have been one of those. Instead, I got to enjoy hearing sounds with the use of HAs for more than twenty-five years and since I always knew my hearing loss was progressive (even though the doctors wanted to deny knowing it due to risk of getting sued for a false positive, and I am more angry/annoyed at them for the false negative in a sense), got plenty of time to get comfortable with that. I appreciate my hearing loss so much more now that I have hyperacusis, hahaha.
 
Being a natural fighter, I got into fighting germ warfare before I was even born! :)

But seriously. It's kinda is an interesting story. My mother caught rubella (German Measles) when she was pregnant with me back in 60's. The doctors tried giving my mother the vaccine hoping it would help mitigate the damage to me via fetal shunting. So I was born immune to rubella but had live rubella germs in the back of my throat and thus had to be segregated from the other babies after I was born.
I used to have a good portion of my hearing early on, but started losing it over time. Now I have profound hearing loss on my right side, moderate on my left side. Plus the 'normal' Doc's kept misdiagnosing me with so many things while I was young, that my parents made regular visits down to the mayo clinic and I wound up becoming part of one the specialists long term studies amongst ton's of other medical annoyances. :roll:
 

Angel1989

Well-Known Member
Premium Member
I lost all my hearing overnight. Was sick with Sepsis, then had seizures and diagnosed with P.R.E.S. was deaf before I arrived to the hospital. Doctors have no idea why. Sepsis has a very high fatality rate. One month in the hospital. 10 days in ICU. I'm just glad I survived!!
 

Cheetah

Cheetah Consulting-Closed
Premium Member
I agree with you Angel! But sadly there are some (some? make that many) hearing folks out there that simply could not handle life without their hearing.
 

mbrek

Active Member
Premium Member
I agree with you Angel! But sadly there are some (some? make that many) hearing folks out there that simply could not handle life without their hearing.

...or ugly, fat, poor, able-bodied, etc.

For those whose lives would be better unlived than to be the above, I say "good riddance". The weak don't have much of a place in my life.
 

Angel1989

Well-Known Member
Premium Member
Becoming deaf has opened a whole new word to me. Met many nice people and figured out pretty fast the ones in my life who were "true friends". Turned out, not very many. It's their loss. I think I'm worth the little effort to talk to.
 

Angel1989

Well-Known Member
Premium Member
Hello morning......
Goodbye bed.......
Welcome music in my head......
I am deaf......
But I can see.....
Thank the Lord.....
And let it be!!!!!
 

Angel1989

Well-Known Member
Premium Member
Rhymes

Absolutely! They don't hold a candle to your deaf rhymes! :D

You made my day. I really can't stop. Over these last few weeks, I've made up hundreds. I think it started with not being able to hear my Christmas music that I enjoy so much. Brain has found a "creative" or not "so creative" response! !!!:angel:
 

Cheetah

Cheetah Consulting-Closed
Premium Member
Wirelessly posted (Backberry)

Angle1989 said:
Absolutely! They don't hold a candle to your deaf rhymes! :D

You made my day. I really can't stop. Over these last few weeks, I've made up hundreds. I think it started with not being able to hear my Christmas music that I enjoy so much. Brain has found a "creative" or not "so creative" response! !!!:angel:

That's good! I write. We all have our emotional outlets.
 

Angel1989

Well-Known Member
Premium Member
Outlets

Wirelessly posted (Backberry)



That's good! I write. We all have our emotional outlets.

Some of my rhymes are not printable!! Man I'm weird!!! Just found out that my appointment with the "specialist" is tomorrow. I don't know what to expect. Unfortunately, I've been using Afrin the last 2days(don't use for more than 3) but my head is so "full" and my nasal passages are sore. I hope I didn't screw me up more. I'll let you all know the outcome of this appointment, if you care since many of you have been my support system for this whole adventure. Is there any last minute advice????:angel:
 

Angel1989

Well-Known Member
Premium Member
Specialist

Since I was so sick the focus has been on getting over the brain swelling and just getting healthy in general. Had one appointment with ENT. Now I finally have an appointment with the, I think it's called an Otic Neurologist(?). So now I can learn and understand more about my deafness. It took almost 6 months to finally get to see him. I was, and am,hoping I might be able to get a hearing aid. So far my research says with my amount of hearing loss, which is all of it , that hearing aids won't work. If anybody knows this to be not the case please let me know. I don't want the appointment to be all about CI, since I'm not interested in that. Thanks for asking.:angel:
 

Audiofuzzy

Well-Known Member
Thanks for explaining :)
Regardless of what the big medical honchos will say,

please do go to the hearing aid dispensers and see for yourself how much
of a help would hearing aid would be to you. make sure it's TWO.
You'll never know until you try it on.

When I was 18, I was told with the amount of the hearing loss I have no hearing aid will help me anymore.
And it was told this by the head of the otolaryngology department! The 'authority' and all... :roll:

Now I am 54, and not only they DO help but they help enormously.
I can't imagine my life w/o the HAs.

So you'll never know until you see for yourself personally.

As for the CI - there is no rush, but my take on this is as follows- since you were hearing before, there is an excellent chance
that you will have no problem at all adjusting to the CI.

Statistic show the late deafened have little trouble adjusting to CI because they learned to hear and speak BEFORE their hearing loss,
as opposed to the born deaf. That makes a huge difference.

Nor, the CI surgery.
Once again, there is no rush. The CI surgery is nothing however to what you just went thru.
First of all, this is elective, which means it's not a sudden, life threatening disease, non emergency, with unknown outcome.
It is much, much simpler and less invasive.
The hospital stay is at most a few hrs.
You have your basic information about it here:
Cochlear Implant Surgery - Surgery for Cochlear Implants for Deaf and Hard of Hearing People


I would like to encourage you to ask some general info about the CI tomorrow, though, just so you know more or less what to expect
for yourself in your situation, with what you just went thru,

just so you won't be so anxious about it for the future - just so you know,
and in time you will make the decision either way - calmly.

Regardless of if you will or not have the CI and HAs, I would strongly advise to start learning ASL together with your husband.
Together because it makes sense since how are going to communicate with your immediate family, right?
and why not, the more the merrier- and together is fun! :)


Good luck with your appmnt tomorrow!


Fuzzy
 
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