Safire

When I was 18-24 months old, I became very ill. Nobody knows exactly what it was but I got infection after infection, almost died, and almost lost huge chunks of my skull. I've been hoh since. My mom always knew something was wrong but since I adapted so well, learning to read lips on my own, nobody could really tell. It wasn't until I was *4* that I took a hearing test to make me eligible for a school contest. I passed the sight test and bombed the hearing. (Of course.) It took us years to get my dad to even GRASP the concept of his "messed up" daughter. (Yes, I literally heard him say that.) Nothing was wrong mentally, I had an IQ of 130: Genius level.

I got my first pair of hearing aids at age four and since I got sick, we have found 9 document surgeries out of 14. The rest of the records were lost during my parent's divorce.

3 months ago, I was your "normal" 16 year old, moderately to severely impaired, in band, and just being a kid. 3 months ago, you'd had thought there was nothing wrong. I was still writing poetry, still having a blast in school. Thank god for ARD meeting requirements. It had been two years since my last hearing test so I was long overdue.

Boy, was I in for a shock. I struggled to stay awake in the testing box, not hearing anything, yet knowing that that alone was a horrible sign. I was right. The test showed I had a 20% increasing loss in both ears. This meant that my classification changed and I was only hearing 20% of the world. I have an 80% loss of hearing. I knew I had lost hearing, I just didn't think it was that much. Sure, I couldn't hear anything past a trombone or the drum major's whistles, but heck, I got along okay. I could handle the incapitating headaches after school from focusing so hard. I was passing everything even though I struggled in spanish where everything sounds the same. There really were no warnings.

The next morning I awoke with a terrible ear infection that cast doubt on the first test. I went in about a month after and got almost the exact same results.

Both of my doctors recommended me to Houston where I met a doctor named Dr. Chang. Mom called him a "superspecialist" because he had degrees in both hearing and neurological stuff. Once I finally got to my appointment, I was upset to see my estranged dad there. (BLEH!) I was led into another testing room. They did bone tests that literally hurt and all kinds of other stuff. Finally, I met the man that could help me hear again.

As I gingerly took off my hearing aids, he was shocked to see the constant allergic reaction inside. I am allergic to my earmolds but deal with it each and every day. I hardly take them off, I am too afraid at night to sleep without them. My normal doctors both agreed I would need cochlear implants and after hearing only good things about them, I was excited. He made me do the "drunk walk" and noticed I neurologically was a bit off. He took note of my constant tinnitus and dizziness I sometimes get. During the implant surgery, Chang is thinking about putting another patch on my left eardrum that refuses to close. For the first time in my life, I was diagnosed with a birth defect, the telltale sign being my short and narrow ear canals that I can't hear out of it they swell. He said the defect didn't cause the illness, it just opened the door to it. I will probably be getting cochlear implants this summer. My band director has offered to let me work in the pit crew in band because I know how to play piano on top of alto sax.

So far, I've already gotten my meningitis/pneumonia shot. I still have to get my MRI and fail another test to prove to the FDA that I need the implants.

Deafness

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Sares

Sorry you’re going deaf but in this world I do not feel you will be missing much just a slight readjustment of your living style.

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I always enjoy a quiet evening at home.

deafdyke

Safire, Awesome that you're getting CIs. Have you thought about going to Deaf Camp so you can learn ASL too? Gally has a program for dhh teens to learn ASL!
Summer Youth Programs - Gallaudet University
There's also Texas School for the Deaf: Texas School for the Deaf
and NTID's summer programs too! (but it looks like the registration just closed today
RIT - NTID - Competitions and Summer Camps

Sarfarigirl2011

welcome to AD, I had the same problem with the earmolds since I was extremely allergic to full bright colors hope U have fun on here!

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s

Sammydgp

im hearing, but I don't think I would want CI's if I had a choice. I have Dyplegic cerebral palsy, and I don't want to change that either. But it's your choice and I'm happy for you.

Sammydgp

Im hearing, but if I were deaf, I wouldn't want CIs. I have Cerebral Palsy and I wouldn't want to change that either. But it's your choice, so good for you.

Bottesini

But since you are not deaf, your input is completely valueless.

You can't know the feelings of any deaf person.

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Bebonang

Botts is right. As a hearing person yourself, how would you know about deafness? Many hearing parents or hearing authorities think they know all about deafness. They have no idea what d/Deaf children and people have gone through difficult life trying to understand in the hearing world. That is why we need ASL to be to communicate and understand what everyone said whether we were communicating with deaf people or having an ASL interpreters to interpret for us to understand in the hearing world. We really abhor oral way but we were forced to use oral way just because they don't want to learn ASL and expect us to be like them as hearing person. No way as it does not work that way at all.

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I HAVE BEEN DEAF SINCE BIRTH, AND IT IS STILL AWESOME TO BE . (thumb up) (very happy)

Smithtr

welcome to alldeaf

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honey.toronto

Welcome! It sounds like you're a very strong and determined person, that will serve you well through your life. Good luck with the ci's, I cannot imagine wearing ha's, uncomfortable and in pain every day like that. Quite a few members here have been through the surgery, as a hearing person who hopes to be a terp, I don't have the experience of this, but I really admire your perserverence.

Bebonang

So surgery is okay, when there is complication. There is nothing wrong with hearing aids. Why have surgery for CI when there is no emergency? It make me mad about it all especially babies. Geeze.

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I HAVE BEEN DEAF SINCE BIRTH, AND IT IS STILL AWESOME TO BE . (thumb up) (very happy)

darkbunny101

Welcome to alldeaf and good luck on your CI surgery!

honey.toronto

Bebonang, I think you took my post the wrong way? I was not commenting on the op's choice to go for ci surgery either way, merely offering best wishes for op's better health and comfort without the allergic reactions she is having to her ha's. Obviously op feels ci's are what is right for her and it is not my place to tell her differently.

I must say, I agree with you about ci's for little babies, but I would never impose my opinion on someone with a Deaf child, but would seek to offer information on all options, such as hearing aids, or simply signing. From what I have read here, it seems a lot of hearing parents are given ci's as the only or best option with little information or opportunity to research for themselves. I don't know if this is true, but it is what I have observed.

pogy

@safire: Am touched by your story and I admire your determination.

I believe the cochlear implants are away too risky. The brain is a delicate organ and human being are just not perfect... @safire: I don't mean to scare you dear.

Am heard of hearing. It started back in 2008 when I was preparing to sit for my final high school exam. Here in Kenya it's called KCSE meaning (Kenya Certificate of Secondary Education). It was mid 2008 and I had a whole half a year still to go. I remember running away from classes so that I could study, because if I had attended class I would just hear next to nothing and waste my time. That's how I survived and I passed my exams, and qualified to join University.

I have not gone for any tertiary education yet. How will cope in an oral class with my condition? I have a hearing aid but it doesn't help much. The doctors say that I need a powerful one.

So how am I making a living? I decided to use online tutorials, bought books, etc, and taught myself Web Design and programming. I work as a freelancer and am glad to say that I have a good list of sites in my portfolio, cooperate clients, etc.

My message is that going deaf is not the end of it. It's just a beginning of new challenges. We should try to accept it and see how we can live with it. Am still mastering sign language, and it's beautiful! We are hosting the International Deaf Awareness week in my town - Mombasa, and I look forward to great fun. I also hope to meet a cute deaf girl one day, court and then marry. I have just fallen in love with the deaf community, it's who I am now.

I may look for a powerful hearing aid but CI is not an option.

lovezebras

A CI has nothing to do with your brain.

@safire - good luck with your surgery. It's good that you've tried hearing aids and know that they aren't for you. In the mean time it's still good for you to wear the ha's so that your hearing nerve is always stimulated...makes listening with the CI easier, or so I've heard. You can get hypo-allergenic molds as well instead of using the ones you're allergic to.
Also a tip that if you use your audiogram and see where you hit in dB for your loss it's a better indicator of what your loss is. Percentages actually are not correct for saying what kind of hearing loss you have.

Mimsy

Welcome to alldeaf, and good luck with your decision. Only you know what's best for you.

pogy

@ AliciaM: If what you are saying is true then looks like I have to find out more about the CI. I thought they were inserted in the brain by surgery???

Sarfarigirl2011

the implant part with the electrodes are inserted into your skull in case U didn't know.

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18 yr old girl with a moderate/severe in the right and severe on the left.
currently wearing purple Oticon Safari P 600s

deafdyke

huh? No, it's inserted into the coachlear....NOT the brain. Where the heck did you get that?

lovezebras

there is a small drilled hole made in the skull and the electrode is then inserted into the Cochlea which is apart of your ear structure and then the internal magnet rests around your ear area and then you are stitched back up...lol it is not near the brain nor is it brain surgery.

http://edubuzz.org/supportforall/fil...ar_implant.JPG