I'd like to share my experience

Hi - I was born with a genetic bone disease that causes hearing loss: otosclerosis. It is the same thing that caused Beethoven to go deaf. My mother and my sister have it. It causes mostly conductive hearing loss - not nerve loss. Otoclerosis causes deafness because the bones in the ear are fused together - unable to move - so sound doesn't get into the inner ear. How it affected me... I was born - able to hear in both ears. On March 1, 1987,  I woke up and found that I was completely deaf in my left ear. Loads of tests were run and this is when the doctors realized that I otosclerosis.  I was able to have surgery to gain some of my hearing back in my left ear, but I also have tintinnitis. Post-op tests show that I am unable to hear high tones (like birds), and am almost deaf to all low tones. In the range of the human voice - I have about 70% of my hearing. I'm told that my hearing in my left ear is called "Moderate to Severe." My right ear has also been tested and I have some hearing loss in that ear - and it's called 'Mild to Moderate." This means I can hear people talk with me when I'm one-on-one in a quiet environment and the person talking to me is speaking in a normal to loud - distinct speaking voice. In noisy environments - I can't understand anyone. Trying to hear during the day causes me to feel VERY tired. I try to read lips - but that only works when people look at me and don't cover their mouths- AND - only one person talks at a time. I went to the Bureau of Vocational Rehabilitation and they determined a hearing aid in my left ear would help me hear people better. It's digital and amplifies human voices while dampening other sounds. It also has different settings for quiet environments and noisy environments. I still can't keep up with conversations - but I do a lot better than without. I am currently in grad school studying to be a Rehab counselor for the severely disabled and plan learn ASL so I can counsel people who are deaf.  Just thought I'd share.

Hello. I too suffer from hearing loss in both ears but unlike you they do not know why. People in the land of hearing have no clue what life is like for a hearing impaired person.  In my life I have noticed that people tend to not include you in conversations or end conversation with you quickly once they realize that you are hearing impaired. They mistakenly assume you are uninteresting and not worth the effort of getting past this obsticale one in which, they only have to deal with for a very short amount of time not realizing that we have to deal with this every hour of every day. While my being hearing impaired may cause someone else to have to speak louder therefore making them uncomfortable, they have no clue how much more this affects me. I truly hate to impose on another person and repeatedly have to ask them to repeat themselves or to speak up. Even if a person says they do not mind speaking up or repeating themselves I sense the frustration in their voices when asked several times to speak up. People also mistakenly believe that just because we cannot hear them we can automatically read their lips, this isn't true of everyone, some people have the gift while others do not. One thing I am so thankful for is the internet. I have made friends on the net that I am happy to be able to share convesation with where I don't have to ask them to repeat themselves.... in this instance I have found a way to overcome hearing loss.

Kellie, Thank you so much for sharing. Your post touched my heart. I  understand and agree 100% with everything you said! I also notice the days when I don't wear my hearing aid (I teach water aerobics and hearing aids are no****er-proof) - I find that I'm exhausted trying to hear what other people are trying to say. The exhaustion makes me crabby, too.  On the days when I wear my hearing aid - I don't feel as tired by the end of the day. The hearing aid isn't perfect  - but they keep coming up with new and better equipment for people. AND, like you, I've made friends on the internet where we can talk through various forums, instant messaging, ect. Again - thanks!

Hello there, I have to say that I truly understand Just how you feel,  I have otosclerosis  also, and how I found out was one day I went to use my telephone to make a phone call and I could not hear a dial tone in the phone.  I thought that my phone had been disconnected  for some reason.  But when my children came home from school and my husband home from work they all used it and thought I was nuts because I had been upset all that day over not being able to call anyone.  Now silly me never thought to put the phone to the other ear until my husband asked me to. it was then I new I had hearing loss.  My ENT told me I had otosclerosis and I did not want to believe him and thought he just wanted to operate on my ear, back then it was just my right ear, Since then I have seen several ENTs and they all say the same.  about 2 years back I had gotton a hearing aid for my right ear the cic hearing aid is small and fits way down in the ear. well that lasted all of 6 months 2200.00 down the drain. back then my hearing loss was moderate loss within that year I started to loose some hearing in the other ear and begain to have some nerve loss in my right ear as well so the sugery would not work for me @ all.  Now today I have severe loss in my right ear with nerve loss as well and in my left ear I have moderate to severe loss also with some nerve loss.   For many years I tried to tell my family about this disease but no one understood me.  Everyone wondered why I was loosing my hearing, Until my birth father who did not raise me. I was talking to his wife and she was telling me her youngest daughter was having sugery on her right ear because she has otoscelosis.  then I knew where it came from.  My Dad blames Himself  sometimes for my deafness but it is not his fault.  For me life is sometime lonely and stressful,  Communication is hard because my family do not know how to communicate with me and refuses to learn sign language.  I Work as a nurse on weekend nights so I do not have to be in the mist of all that confusion is what I call it.   One of my worst fears happened  a few days ago, while working the day shift.  The Doctor was standing across from me giving me verbal orders for a patient, and as much as I read lips I could not read his and I could not hear him speaking, My tinnitus was very loud  the phone ringing  call lights going off. I wanted to cry right then and there.  But there was one nurse our team leader who knew of my loss . She stepped right in and started taking down the order for me .  The Dr was sort of frustrated with me I could see it in his eyes, when it was all done I thanked her so very much. If only she knew how much she helped me that time.  she also mentioned to the Dr that I was HOH and going deaf.  But she also told him I was one of the best nurses they had on the unit.  I can't wait to get my hearing aids , not sure how long they will work for me but for now I need them.  I have already started taking asl which my Doctor  said I should do.  So once again I feel where you coming from.

My sister had otosclerosis in both of her ears. She also had the stapendectomy surgery performed for both of her ears and it helped her to hear better with the hearing aids - she explains it to me that she went from having profound hearing loss in both of her ears to moderate hearing loss in both of her ears with her hearing aids.

I paid $900 for my first hearing aid (just one "in-the-ear" for my left ear). The first hearing aid is the old analog type. It didn;t work well enough for me at work or in restaurants (or other noisy situations), so I went to the Bureau of Vocational Rehabilitation (BVR). They paid for my second hearing aid ($3000) which is digital "in-the-ear" and has technology to amplify vocal range and mute sounds in other ranges. It has four programs: automatic (that can tell by itself when I'm in a noisy or quiet environment and adjust accordingly), two manual (one for noisy environmnents and one for quiet environments), and one extra one that I could have been modified with a T-coil to talk on the phone. I chose that program to be  modified to allow me to hear music. An audiologist said there is newer technology out now that is even better than my digital. BVR said if the doctors think the new technology will help me perform work and engage in social activities - then BVR may pay for the new technology. I don't know if you have BVR in your state. (It might be called something different.) It wouldn't hurt to see if you'd be eligible to get the new technology hearing aid. But it couldn't hurt to see if the newer technology works for you. I do understand about feeling lonely. I get as frustrated in conversations as others do. I get so very tired trying to listen all of the time. I read a book about coping with hearing loss that says people who can hear don't have to focus all their attention on conversations. They're able to listen to a few words and be able to keep up with the conversation AND figure out what everyone is talking about. People who have a hearing loss can't do that. We have to listen completely - and that is mentally tiring. Sounds like you're learning ASL, too. I hope you find it to be as freeing as I do. I think it's wonderful that the other nurse stepped in to help you get the information from the doctor. I've never had anyone step in like that for me. I'm sure you appreciated her help. AND - I'm guessing your experiences have contributed to you being a fantastic nurse!

My sister also had the stapendactomy but she has to keep going back for revisions, I rather just wear the HAs instead  and yes we have A Voc Rehab here as well I have been approved to get hearing aids throught them because my insurance was giving me a hard time , first they say thay pay then they told my audiologist  thay they would not pay for digitial only analog and even then only a  small portion of that.  now after I have been aproved by voc rehab, my insurance say they will pay. I do not trust my insurance @ this tim and I can not aford to pay for my hearing aids  but I have to contact voc rehab and tell them what the insurance said I am afraid that I may end up paying for them myself or go without.  right now I am @ a loss what to do. Voc rehab wants something in writting  but insurance wont give anything in writting to me or them.

I find it strange the the insurance company won't give you anything in writing. To me - it sounds like they aren't going to pay for hearing aids. (I know my husband's insurance doesn't cover hearing aids - analog or digital). Will the voc. rehab. pay for your hearing aids without hearing from your insurance company? It's my understanding that voc. rehab. will pay for the type of hearing aids that is best for you and your work. If insurance is just saying "analog" - they aren't considering the type of hearing aid you might need. Please talk with voc. rehab. again - and tell them that your insurance company isn't sending anything in writing. I do hope you get hearing aids that help you.

Heard from Voc rehab today and they had been with me through this insurance mess,  they are going to over look the insurance this time because they have outstanding proof that I more then qulify for the hearing aids.  my VR counslor took all he had to his suppervisor and she said yes they will get them for me. But now the insurance saying they will pay but will not send the letter to me or voc rehab. I really do not trust them@ all.   My audi says I should tell voc rehab that my insurance will pay a portion. I do not want to prolong this any further I think I should let voc rehab do what they do.  The thing that bothers me the most is that my Insurance will pay for me to have  gastric bypass surgery. how crazy is that.

Oh yes I forgot to tell you that I went to a friend's house  whos roomate is Deaf and we had a good time.  they invited 2 other people there as well 1 hearing and one Deaf ,Everyone signs on different levels.  I was told that I use asl very well and they are willing to teach me more as I go.   They were very impressed.  Felt good for a Deaf person to tell me I sign good  and they understood me well. Been invited back on Tuesday evening.   Although all is ok right now for me I still am facing the fact that I am going Deaf.  Being stuck in the middle is the hardest for me. because I am not hearing and I am not Deaf  Have a good day my friend

I personally think you've made the right decision to let VR get you your hearing aids. That is what is best for you...and that's important right now. Oh - before I forget - my VR rep gave me two books that I found to be helpful: Hearing Loss and Hearing Aids - A Bridge to Healing by Richard Carmen Coping with Hearing Loss - Plain Talk for Adults About Losing Your Hearing by Rezen & Hausman. As for insurance companies. I don't understand why they do the things they do. I think it's great that you sign so well! I know I'll get better at signing as time goes on. It sounds like the Deaf friends you have will help you through this time in your life. I've not made any Deaf friends yet, but I do go to Deaf events. In August there was a silent picnic that invited SCC, WSU, and local high school students taking ASL to attend (to provide them with an opportunity to use their ASL). There are silent meetings at the food court in the mall the 2nd Friday of every month. I've been going to these to give me a chance to use my ASL. I'm still at the point where I'm real nervous when I start talking to people in sign language, but I keep going to I can get over my fear. I think I understand how you feel about being stuck in the middle between hearing and not hearing, but it sounds like your handling it a lot better than I am. I get angry with hearing people who forget that I can't hear. I don't mean acquaintances, I mean my husband, daughter and close friends. They talk to me when they are in another room - or with their head turned away from me - or their mouths covered up. I keep reminding them what I need, but they keep forgetting. I feel like they don't care. (They have also told me that they don't want to learn ASL). I looked online and discovered a huge support group for people who are hard-of-hearing. The website is www.shhh.org. I've only just found this website - and don't know all of the advantages to it yet. For instance - I don't know if it has good information to help people like us who are going deaf. I think I'll look at the website more closely after Thanksgiving. I better run. I have a LOT of cooking to do! Have a safe and Happy Thanksgiving!