Persons who have received cochlear implants, whether voluntarily or involuntarily, are an invaluable resource in our community. If you are an implantee, we encourage you to share your story with us. If you are a deaf person with a currently-functioning implant, what has your experience been? Has it been good? Bad? If your parents made the choice for you when you were a child, how do you feel about it? How has your experience been? And if you’re one of the growing number of deaf people who have stopped using their implants or have even had them surgically removed, we’d like to ?read? from you. Please E-mail us at editor (at) cochlearwar (dot) com.

Hello, my name is Daniel Foley and I have been implanted at age 13. It does nothing but causes problems with me physically. Since I have been implanted, I noticed that my metabolism slowed down and I gained weigh. By the time I became 16 years old I weigh almost 300 pounds and I had to lose weigh so I can hear, that is what my doctor told me. Then I got very sick and ended up in a wheelchair and gained more weighs.

Then I finally stopped wearing it and I felt so peaceful and less stress. Yes, I still am heavy and my BP and cholesterol are up to the roof. I really wanted to take the inside part out so bad.

The strange thing is I was supposed to hear things with the implant, but I never heard one thing and my parents still tried to make me wear it until I became 18 and now I am almost 20. Now my parents are doing better. They also told me that my personality without the implant on is better than with it on. My friends said the same!! I even like myself better as Deaf person than “hearing” person.

Hello, my name is Betsy Hitzel and I’m 28 years old. I just got my implant last October 2003, and I’m very happy with it.

The cause of my hearing loss is called Perrault’s Syndrome. I was deaf in my right ear [and] was fast losing hearing in my left ear, which no one knew why. My life has been a struggle with my hearing loss. I had to go to speech class in grade school, because I had a problem pronouncing words, which helped some, but there are still words I cannot pronounce. I fell 2 grades [behind] because of my hearing loss, and cheated my way through high school because I could not hear what the teachers [were saying]. I’ve worn 3 different types of hearing aids through my childhood, which would help for a couple months, then it wouldn’t. I spent my whole life denying I had a hearing disability, because I was ashamed. Because I never heard when people talked to me, I was shy and didn’t talk to very many people. It was like I lived in my own little bubble.

When I heard about the implant I was scared and worried, but the more I thought about it, I got excited. Now I’m happy I did it. Sounds that most people take for granted, such as birds chirping, wind blowing outside, even hearing the engine of a car when started, things people do not think about. So I’m glad I got the implant. I admit I don’t hear every word people say, but I don’t say “Huh?” all the time now.

I’m hoping I can get the implant in my left ear. I feel whoever invented the implant, I would like to shake his or hers hand and thank them for giving me my life back.

Hello, My name is Lola (Beaver) Phillips, Ben Beaver is my Great Uncle. Anyway I come from a large deaf family and I have a deaf granddaughter. And I have a cochlear implant my self. I have had mine for about five years and I am against children having one until they are much, much older. I want to tell you my story and see if you can pass it along for me.

One day I was having a bad toothache and I went to the dentist and the dentist says nothing wrong with my tooth as I had root canal where the pain was and he asked me want it pulled out and I said “no!” so I asked him if he thought it was coming from my cochlear implant as I notice with certain sounds it would make it ache so I decided to go back to the place that did my cochlear implant and I explained to the doctor what I just told you and he was stunned and acted like it was weird but decided to test me in the booth and use different pitches of sound and found there was a certain sound that made it ache and corrected the mapping on my hearing aid.

Please do not allow these little ones to have it done also it is hard for me to get an MRI due to the cochlear implant so theses little ones may not be able to tell something is wrong. I hope this will help.

Thank you,

Hi. My name is Nan Young. [Editors’ note: All names in the following account have been changed to protect the privacy of the contributor, since her case is currently being litigated.] I live in Melbourne, Victoria, Australia, I am profoundly deaf, late-deaf, I lost my hearing at age 44, I had an implant put in in January 2001 and I had it removed in April 2002. I would love to be able to tell my story to you, so that many more can see the problems I had with the implant and also the trouble I had with the doctors not listening to me, and then leaving me to fend for myself with not much help from them once the implant was removed. I would like people to see the other side of the Implant “Problems” but first I need to see if you get this, so that I can continue to give my whole story. This I need to do for myself and for all those thinking of getting the implant, so that one day I may feel that I have done my best to show the other side of it.

Please, when you get this E-mail, E-mail me back so that I know you have received it and then I can continue with the long story of my journey with getting hearing from the implant and then going back to No Hearing again.

Thank you for this site; it is much needed and I really appreciate it.

The following account is the official complaint filed by Ms. Young. It has been sparingly edited, but not abridged. For example, “Drs” has been changed to “doctors,” and “Vic Deaf” has been spelled out once as “Victorian Deaf Society.” “RVEEH” has been spelled out as Royal Victorian Eye and Ear Hospital. (This hospital houses one of the world’s leading cochlear-implant clinics.) Punctuation and capitalization have also been regularized. We have responded to Ms. Young’s request, and thanked her for sharing her story with us.–Editors

To Jan Jones, Complaints Department
Royal Victorian Eye and Ear Hospital
East Melbourne, Australia

This is my Complaint Summary as I remember it happening. I don’t recall all the dates for all these visits and trips to hospital, but they would be in my Medical Records at the hospital, and also the Audiologist has her records of dates and times as well.

Firstly, I was given the operation date back in December of 2000. Kim Arnold, the audiologist, rang me to tell me that the date of the operation was 30/01/2001. I was over the moon. But on the 5th January, I had a setback. I got quite a bad ear infection in the right ear, as this was the ear that was going to be operated on. I rang Kim and she made an appointment for me to see Dr. Patrick Smith; the appointment for this was 10th January. Dr. Smith told me that the infection was bad, but he would be able to clear it up before the operation, so not to worry. The infection got worse so I went back. This time I saw Mr. Robert Cash. My daughter Kat had to drive me as I was unable to drive. Mr. Cash did some tests with me, and said he didn’t think it would be a good idea to have the operation, he said I should wait and have it in about a month’s time. Then a week or so later the infection cleared, so I again saw Dr. Smith. He believed that it had cleared and there would be no problem going ahead with the scheduled date of the operation on the 30th January.

I went into the hospital on the 29th January [and] stayed overnight before the operation, which was early on the 30th. I awoke from the operation feeling reasonably good with my head bandaged, a little dizzy, but that was all. Late in the afternoon the bandages were removed. Soon after this, I felt like I had fluid in my head around the implant area. I spoke to a young doctor (can’t remember his name), who said it was impossible to have fluid in that area, and said not to worry, so I tried not to worry. Still, the next day I felt like the fluid had got worse, and I had this noise also in my ear. I saw the same young doctor in the hallway of the hospital and told him, and he said not to worry as this would go [away] in time. I was allowed to go home the next day, Friday 2nd February. That night, I felt very sick at my parents’ place, and my head was hurting really badly. My father rang the hospital and they told him to take me to the local G.P. to look at it, which we did. He prescribed antibiotics and said that it was inflamed and infected. This was on the 3rd February. It did start to feel a little better for a day, then it got worse, so I went back to see one of the doctors on the 6th February. Mr. Cash was there, and he said that there was a stitch abscess and he would cut it out.

On the 13th February I was to be switched on! My daughter Kat was with the audiologist, Kim Arnold, and myself. I was switched on, and it was a great day for me, to be able to hear again! It was quite an experience; the sounds were very strange and not what I had remembered, but I was happy, as I could hear something. For the next couple of weeks I used the implant a lot trying to understand the T.V. and people talking, I had to go back to the Implant Clinic on a regular basis once a week, at that time.

On my next visit to see Kim, I told her of the noises I was having and that even when I took off the processor I was still having these noises and that they were keeping me awake at night, and that the infection on the incision line was still there. So she took me down to see a doctor,, and he said that I should stay in hospital on more antibiotics, which I did. On this stay I told the doctor of the fluid feeling and the noises I was having, and he said not to worry, as this was quite normal, some tinnitus after the operation. I said I didn’t believe it was tinnitus, as I had had tinnitus all of my life, and this was totally different, this noise was when I touched my ear or moved my head from side to side, or tried to lie down at night. It kept me awake. I had had hardly any sleep, and I believed it was getting worse. Then Mr. Cash said not to worry about it too much, and he gave me a script for some tablets to help me sleep.

I was to still see the doctors and Kim on a regular basis, and at each visit I told Kim and the doctors of the problems I was having, but things never seemed to get anywhere, and I was not getting any answers.

I had another trip into the hospital. This time it was for insomnia. I had not had any sleep for days. I saw Mr. Cash, Kim Arnold, and Dr. Smith on the 2nd floor in Mr. Cash’s office. They all spoke with me, and Kim and Dr. Smith believed I should stay in hospital again, to help me get some sleep. I don’t know if Mr. Cash agreed. But he left the room, and I was with Kim and Dr. Smith and they asked me to please stay in the hospital, so I did. I was put into a private room so I could have complete rest.

Mr. Cash came into see me the next day and said to me that he was very, very sorry for the trouble I have been having, and that getting some sleep would help me. I stayed for a couple of days with little sleep, still! Then I had that same young doctor whom I had spoken to about the noises and fluid. He told me that I could go home! I said to him, “Mr. Cash told me to stay,” he said “No! I said you can go!” and then he left the room. The male nurse, Steve, came in and I just cried and cried, I was so upset at what was going on. Steve the nurse went and got his supervising nurse, and she said, “Don’t worry,” as Mr. Cash had said not to leave the hospital until he had seen me.

Mr. Cash came and saw me again, and again he said he was so sorry while patting me on the leg. I was furious and said, “What can I do?” Mr. Cash said he would just like to give me a big hug to help me, but he didn’t. It was this day that I asked Mr. Cash to just please take the implant out! I didn’t want it in anymore; it was causing me too much trouble.

My next visit to Kim was quite strange. I felt like I was a burden. Kim asked me if I would like to see the social worker, Bette Jamison. I agreed to give it a try. So I saw Bette. She was there to help me cope and to try and get some answers from the doctors as to what they were going to do next.

At my next visit, Kim told me that I was not the only person having problems with the implant. There were others! When I saw Mr. Cash next, I asked him about the other people with problems, and I told him Kim had told me of these others with problems like me, and his reply was that Kim didn’t know what she was talking about and that what she said was piffle!

By this time, I was getting very depressed and frustrated with all that was going on. The doctors were not listening to me, and the ear infections were getting more frequent and a lot worse and for longer periods. I kept asking the doctors and Kim, “Could you please take it out?!” I said this on numerous occasions, but with no answer.

My next few visits to Mr. Cash were very interesting. He was saying that my neck was causing my problems with my ear, then said my back was causing the problem. I said to Mr. Cash [that] I was fed up with coming 5 hours to hear these excuses, and be in with him for about 10 to15 minutes.

Things got so bad that the social worker, Bette Jamison, made an appointment for me with Mr. Cash, Kim myself, and [herself]. This appointment was on the 24th May 2001. At this appointment, I was handed a letter, stating how concerned they were for me. This letter also [had] a list of Management Options that they, the Implant Clinic, would give me to help. There [were] a number of options for me if I would prefer not to undergo further surgery, also a list of options if I was to consider further surgery. (This letter I have already sent to you.)

I got so sick of hearing these things that I took Annike Reed, a lady from Victorian Deaf Society, with me to the next appointment. This appointment was with Dr. Smith, Ms. Reed, Kim Arnold (audiologist), and myself. At this meeting, Dr. Smith told Annike and myself that the electrodes were too far down the neck, and he looked at the CT scan while saying this. He then said that this would be causing the noise in my ear. He said they would have to operate to fix this problem. Annike asked “When?” And both Dr. Smith and Kim said, “As soon as possible. This is urgent.” I asked the doctor to also look in my ear, as I had had some fluid and discharging from it. He said “YES!”—that there was fluid and infection in the ear, and gave me a script [perscription] for some drops to clear it up. He also said “As soon as this clears, about two to three weeks,” they would operate. I told him I was going on holidays for two weeks. And he said, “Okay, when you come back from holidays the ear should have cleared up,” and they will be able to move the electrodes up higher in my head. The doctor also said to contact him when I got back, I said, “Okay, that would be great!” I was quite happy, thinking that after my holiday, things may get back to normal and I could get on with my life again. This was in August 2001.

I came back from my holiday on the 4th September and made an appointment to see Dr. Smith. I went into see him and was told he was sick—even though I had seen him walking around! So I was told I would have to see Mr. Cash. I said “Okay,” and went into see Mr. Cash, and he said, “What are you doing here?” I was stunned. I told him, and he said he knew nothing of this. And I would have to wait until he had spoken to Dr. Smith. I was furious and told him that he said that I should try this medication, Tegretol, and contact him back in about 4-6 weeks. I walked out of there so upset, that again nothing had been done.

I E-mailed Mr. Cash after the time he had told me to stay on the tablets, but it took a long time for him to contact me back. When he did reply to me, he said he thought it would be a good idea for me to see a psychiatrist, which was actually on the letter that was [given to me] back in May 2001, and this was now September. This was the first time that anything thing from the letter had been mentioned. Also, I forgot to mention that Bette was trying to get me accommodation somewhere for long-term stay to help with the sleep and for them to check the implant and infections. That was [also] back in May, and it was now September.

Every time I saw the doctors there was always an excuse. That something else was wrong, never the implant! And I still asked [them] to please remove the implant or try and fix it, and also to move the electrodes up like Dr. Smith said he was going to do. Mr. Cash’s response to this was, “It’s piffle; the electrodes are not too far down the neck.” And I never saw Dr. Smith again after that; it has always been Mr. Cash.

My next visit to Mr. Cash was with my brother, Mark Riley. When we got there to see Mr. Cash, he had Dr. Smith, Kim Arnold, and another man, a psychiatrist (I don’t remember his name), and myself. Dr. Smith did all the talking, and so did my brother. It started with ear infections, again, and that there had been a lot of fluid coming from the ear, and again this was put aside and they, the doctors spoke of what they wanted! I said that I wanted the implant out, and Dr. Smith said that it would be too expensive to do that. My brother then asked Dr. Smith, was money the problem here? And Dr. Smith said “No, of course not!” Then my brother said, “How about [if] Nan sees Dr. Sol DiLeone” (psychologist) “to see if he could help before the final decision was made?” They all agreed—except for me! I believed I had waited long enough, but the majority ruled, I guess, and so I left again with no answers to any questions or an answer on getting it fixed or removed. But I agreed to try this for approximately 6 weeks.

I went to see Dr. Sol DiLeone. He seemed rather good; he was the first person to actually listen to me about my ear and what was going on with it and the noises and the ear infections. I saw Sol a number of times, but he didn’t seem to be doing anything much for me in the ear department. The ear infections were getting worse, and the fluid was really bad and it had a terrible smell as well. My G.P., Dr. Forrester, whom I had seen on several occasions when I had ear infections, had said that the ear was so infected it had totally closed up and he was unable to even put drops into it.

My next visit was to see a psychiatrist and also Mr. Cash. I had my parents with me this time—Kevin and Maggie Riley. Mr. Cash asked me to see the psychiatrist, so I did by myself and then my parents came in. He asked me lots of questions, and also my parents as well. Then we had to wait for Mr. Cash to come back to see him; I had gone outside with my mother when Mr. Cash arrived. My father asked him what was going on. Mr. Cash replied to my father that “if she wants the electrodes moved, then we will do that, but we don’t think it will make any difference.” Mr. Cash also said to my father, “We are not worried about what she says now; we are worried about what Nan will say in 12 months’ time.” My mother and I came back and saw Mr. Cash, and he didn’t say much more and then he had to go again, with no answers. I left again feeling very frustrated! Nothing was being done, again, and still there were infections in my ear that they didn’t believe.

[On] my next visit to Mr. Cash, I said I wanted the implant taken out. Again, his response was, even if the implant was taken out, at this stage he didn’t believe that it would get rid of my problems. He believed that it was too late—that the problems I was having would still be there even if it was taken out, as it had been in too long! So I said “WHAT!?! Does this mean you have stuffed my head up?!?” And there was no reply. Kim walked out, and I just cried and cried, and then Mr. Cash said he had to go, but please make another appointment time.

During all this time I had been seeing [the] lady from Vic Deaf, Annike Reed. I spoke with her and she was appalled at what was going on and the treatment I was getting.

My next appointment with Mr. Cash was 17th January 2002. At this meeting was my daughter Kat (she is 18), Kim, and myself. I told Mr. Cash I had the start of another ear infection. So he asked me to go and get on the bed so he could see it. While I was in with Mr. Cash, Kim was in the other room asking Kat a lot of questions—things like “What would you feel like if your mother had the implant removed?” and “Why had your mother been to see so many other doctors about the ear infections?” I felt like this was very inappropriate to ask my daughter, as it was my decision and no one else’s. Mr. Cash looked in my ear and he said he believed it was my jaw that was causing all the problems, and didn’t believe me about the infections. Kat said she was disgusted [at] the way I was being treated. She said they treated me as if I was a child and spoke down to me. This time, Mr. Cash asked me to see a physiologist to get my jaw checked out. I never did this, as I was furious that he would think that my jaw was causing my ear infections.

After that appointment I went and saw Marina Petrakis, [of the] Complaints Department at the Royal Victorian Eye and Ear Hospital. Annike Reed from Vic Deaf had made this appointment for me.

My next visit to see Mr. Cash was on the 31st January 2002. At this meeting [were] Mr. Cash, Marina Petrakis, Annike Reed, Kat Young, and myself, I started by saying to Mr. Cash that an infection had started again in my ear. He got off his seat rather quickly and said, “Good, let me see!” He looked in it and said “YES!”—that there was an infection in the ear. He then went on to say that there was a small hole in the ear and that an electrode was trying to push through. I was amazed and sort of happy as well that he had actually seen the infection and that he had also seen something else as well. He said he thought I had better stay in hospital so they could treat my ear with strong antibiotics on an IV drip, and also check the hole as well. We all left the appointment and I said to both Marina and Annike that I felt relief, but I was unsure as to why he had just said it this time! Was it because Marina and Annike had been there? They said “No,” that he wouldn’t have said it if it wasn’t there! I was very unsure, as he had never said anything previously before; it was as if I didn’t believe him myself this time.

I was to go home with my daughter and then head back to the hospital later that night. I went back to the hospital around about 10.00 p.m. I had to go to Casualty. I waited there for ages, then I saw a nurse. She took my details, and then I waited to see the doctor to put me into the hospital. This was about 11.30 p.m. I saw a doctor and he asked all the questions and then admitted me. He said, “I need to take a swab of your ear for the infection,” which he did. He then said he could not see any hole in my ear, like Mr. Cash had said. I got up to the room at just after midnight, and they put the IV drip in after 12.30 a.m. The next morning, the 1st [of] February, I had to go and have a CT scan. I did this and later that night the doctor came in and told me about the scan. He said that the scan showed a lot of fluid all around the implant area. I was totally stunned! Fluid? He said yes, but he could see no hole that Mr. Cash was talking about.

Mr. Cash came into see me and said, “We can treat this and fix the problem.” I was over the moon. Then, later on the next day, at about 2.00 p.m., I was asked to go down to see Mr. Cash on the 2nd floor. Down there, I waited for ages, but eventually I saw him, and he said he would like Dr. Smith to see me as well as a Mr. Gibson, whom I had never seen before. I was down there for nearly 3 hours with them checking my ear, and then the CT scan, and then more checking my ear. Dr. Smith came and spoke to me about it all. This was the first time I had seen him for ages. I spoke about the fluid, and he then said to me, “Don’t jump in too early.” I didn’t understand what he meant. Then all 3 doctors had me up on the bed, checking my ear, and then they said they had finished. I waited again for ages, and Mr. Gibson came up to me and said, “There is NOTHING wrong in your ear other than an infection.” I was devastated. WHAT?!? Mr. Cash had told me there was a hole and the electrode was pushing through, and the doctor told me that the implant area was full of FLUID! Now I was told there was nothing?

I went back up to my room and I was too furious, I think, to even cry. The nurse came and said that “Mr. Cash would like to see you in his rooms,” so she took me down. I actually saw Mr. Cash in the hallway. Before his room, he spoke to me in the waiting area, me sitting and him standing at the desk there, people passing through all the time he was talking to me, then he asked me to come into the room so he could see my ear. I did, he said he didn’t see anything in there this time. I said “Could you please tell me how I can have a hole and an electrode pushing through, and my head full of fluid and now, a day later, I have nothing?!?” He said he was sorry; he must have made an error when looking in it. I said “Oh, yeah? Well, I want the implant removed!” When I said this we were just outside his room, in the hallway, again. He then told me that having the implant removed was not a consideration at all!

I just looked at him and said, “Get stuffed!” and walked off.

I am not pleased with myself for saying that, but I was just so furious that this had all happened. Then I went back to my room. They removed the drip for me. I then asked the nurse if I could see Marina Petrakis again, which I did. I received my Ciproxin tablets from the nurse and was allowed to go home.

I forgot to mention I was approached by one of the nurses on the ward. She said to me I was silly for going to the Complaints Department to see Marina Petrakis. She believed this would not be in my favor at all. And then another nurse came and spoke to me and he said I should go and get a second opinion. He believed that I was getting a raw deal from the doctors and staff.

I am still waiting for something to happen. It has been nearly 14 months and I still have the noises, ear infections, and the throbbing in my head. And still no answers and nothing done. However, I do have another appointment with Mr. Cash on the 12^tth March at 12.30 p.m., hoping that they will agree to remove the implant. If not, I am going to have to find someone who will.

On the 1st March I went and saw my local G.P., and he said to me to ask if the implant was pressing on or against the internal carotid artery, as this could be causing the throbbing in my head.

I am hoping that you may be able to help me get something done on getting the problems fixed or on getting the implant removed.

Yours sincerely,

Hello, my name is Paige Adams.  I'm sixteen years old and here is my story.

I was born to proud parents in May of 1988 and I was a healthy baby with no hearing problems

At one year old, I was diagnosed with bacterial meningitis. Luckily, I survived after receiving a spinal tap, but I remained in a coma for five days until I regained consciousness. Doctors feared that there would be some brain damage and there were no signs of any kind of brain damage.  

My hearing loss began at this point and ended when I was two and a half years old. At the age of two, my mother soon realized that I was not speaking just like others my age, but I was developing other mechanical skills. I was put in late-development classes, but my mother was convinced that I was deaf. The doctors would not listen to her and kept telling her that I was not deaf. Until one day, the teacher noticed the same thing my mother was talking about and that teacher told my mother to take me to the audiologist. The audiologist confirmed that I was profoundly deaf in both ears.  

Immediately after this confirmation, my parents placed me in a program in the city that specialized in the education of deaf and hard-of-hearing children. My mother began taking sign-language classes and carry around books of signs to be able to communicate with me. My progress was incredible that my parents could not believe it.  

Hearing aids were provided and I disliked the hearing aids. So my parents were looking for another efficient way for me to become independent and have many opportunities to learn or communicate.

At the age of five, the University of Virginia offered a possible operation for a cochlear implant. After doing research and listening to deaf pro-implant and deaf community advocates, my parents decided it was for the best for me to receive a cochlear implant. After a six-hour surgery, I had a magnet installed inside my skull on my right side above my ear. Within a month, I was wearing my cochlear implant to school and I could hear things that I had never heard before such as the toliet, people walking on carpet and wooden floors, music, etc. Even if it was overwhelming at first, I was able to maintain my hearing and use it as an advantage for my education and communication skills.  

Today, I still wear the same old cochlear implant and I love it!!!! Even today, I hear something new and it is a learing experience. Also, I enjoy being able to communicate with hearing friends without having an interpreter beside me. I do use an interpreter in the classroom at school to help me to receive the education I need. I am currently a junior in high school and I am taking Calculus, Advanced Biology, History and English courses that happen to be AP (advanced placement) courses in college. I have taken Spanish, Latin, Advanced Chemistry, Algebra (one and two), Geometry, and Precalculus. If I didn’t receive my cochlear implant, I do not think I would have made this far.  

My goals are to graduate high school with an advanced diploma and to go to college and receive a Master’s Degree for a major in science.