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Karen K.

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My Story

 

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I was born 10 weeks premature and evidently had severe bilateral hearing loss from birth. My mother thought I was a good baby not to wake up from all the household noise, but after having three subsequent hearing children, she realized it was apparent even then. The cause may be prematurity, since the risk of hearing loss at that stage and weight is about 5 percent. The roll of the dice certainly wasn't in my favor! Other than this, the cause is unknown. (1)

My maternal grandmother and mother first suspected a hearing loss when I was 2 years old, but my mother pushed it out of mind, not wanting to think it might be true. She thought deafness meant not hearing anything. I was hearing sounds that weren't very loud, but didn't hear other sounds that a normal hearing child would.

Right around the time I turned four, my total verbal vocabulary had 11 or 12 words. My concerned parents were advised that my slower development was probably due to prematurity, needing time to catch up. Nevertheless, my mother tried to teach me words in front of her bedroom dresser mirror. She told me that one time she tried to teach me the word 'pancake', and accidentally spit on me saying the 'p'. Teachers told her later that what she did helped give me a good start on learning language.

At that time, my parents thought I was choosing not to come when I was called. One day, a schoolteacher neighbor saw my father outside calling to me with my not responding. He came over to urge that my hearing be tested. The rest is history.

After the diagnosis, my parents didn't have much time to grieve while the educational authorities took the lead with my schooling. Within six months I wore a body hearing aid and was placed in a deaf class at a special school at 4 1/2 to learn to speak, hear and lipread. After that year, the next two years (ages 5-7) were in a oral deaf class in two different public elementary schools. I attended a school for the deaf for a little over a year at ages 9-10. Otherwise, my schooling was being mainstreamed in the public schools until high school graduation.

My severe hearing loss slowly became worse and crashed suddenly to profound in both ears within a week at age 21, probably due to then undiagnosed secondary endolymphatic hydrops. (2) A sunny July morning in church started normally, but in the middle of a hymn, the organ suddenly sounded distorted like it was underwater in one ear. The problem spread to the other ear within a few days, combined with wooziness, tinnitus and fullness/pressure in the ears. Some time later, hearing came back to some degree in one ear and then receded, and then did likewise in the other ear, thus making true bilateral hearing with hearing aids infrequent. This repeated scenario finally stopped around the time I turned 33.

After the crash, the next 22 years were spent unable to enjoy music or hear the world as I used to. Severe hearing loss and profound hearing loss were as night and day for hearing. Hearing aids no matter how powerful could not bring back much of what was lost.

Then in November 2000, I received the Nucleus 24 Contour, and regained what I thought I'd never get back in this lifetime. Music I played to death at age 16 brought up long buried memories after hearing it again after the cochlear implant. Even with enjoying hearing the world with the cochlear implant, I still had to listen somewhat intently and felt a little one-sided at times.

A second cochlear implant in the other ear for a Nucleus Freedom in August 2006 made hearing complete. The day of the activation, the bilateral hearing sounded nice until shortly after leaving in my car. Turning on the CD player, it started playing a song by a singer I listened to a lot at age 21. Suddenly I was young again, hearing just the way I used to hear back then. It was an emotionally profound moment. Today, I am enjoying hearing everything more effortlessly in stereo, especially music in all its beauty.

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(1) Additional comments on cause:

The 1st CI evaluation's cat scan and MRI showed my internal hearing structures to be physically normal. No pertinent in-utero infections or illnesses were noted aside from my mother feeling a bit under the weather the night before I was born. It is unknown whether any ototoxic medications were given during the 10 weeks of hospital care after birth. (Note: My mother says that the doctor caring for me in the PICU was very cautious about drugs and would not administer any unless he absolutely had to.)

Genetically, aside from a 2nd cousin born with single-sided deafness (cause unknown), my maternal side had exceptionally good hearing in old age to the end. My paternal side didn't have anyone else born hearing-impaired, but had a tendency for apparently genetic old-age onset hearing loss, including a paternal aunt with hearing problems starting in her 40s (extreme case). No genetic testing has been done for my hearing loss.

Also, a book on deafness, reporting on a study of people born with hearing loss, cause unknown, I believe, noted that about 16 percent were born premature.

(2) secondary endolymphatic hydrops:

Some of the symptoms from the crash at age 21 came back in the implanted ear six months after the 1st CI was activated. It was finally diagnosed as hydrops, which was successfully treated.

http://www.vestibular.org/vestibular-disorders/specific-disorders/endolymphatic-hydrops.php

and also http://www.drf.org/Endolymphatic%20Hydrops%20

Hydrops not necessarily Meniere's syndrome: http://www.dizziness-and-balance.com/disorders/menieres/men_eti.html

 

(slightly edited 09/26/2010)

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