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Lisa Munson’s Story

October 18th, 2012 by | Tags: | 2 Comments »

Lisa Munson was born with hearing loss and grew up with hearing aids. She went to Clark School for the Deaf in Northampton, MA for five years and then she was mainstreamed at her local public school throughout her upbringings. She first received her cochlear implant as an adult.

Lisa on the right and her brother on the left.

I was born with a bilateral severe to profound sensineural hearing loss due to maternal congenital rubella. My mom was told that she didn’t have rubella but a regular rash when she was pregnant with me so when she discovered that I could not hear at the age of 4 months; we didn’t know why. At first, we thought it might be in the family as there was some hearing loss in the family but that type is progressive and usually does not begin until adult hood. My mom had a brother who was a doctor and working at the Mayo Clinic at Rochester, MN. The doctors there confirmed the diagnosis of my hearing loss and set about to finding out the cause of my hearing loss. They determined that, yes it was congenital rubella that caused the hearing loss and also affected some of my systems as well. It affected my eyes mostly. I have what they called salt and peppered retinas. That means that my retinas are not completely formed liked others are but have the salt and pepper affect to it. The eye doctors have to monitor the retinas yearly at least for changes. However, this is a story about my hearing loss and how I came about getting my cochlear implants.

I got my first hearing aid at the age of three, and it was a body hearing aid.  I remember that hearing aid vividly. I wouldn’t wear it that much because it stuck out like a sore thumb and I took every opportunity I could to flush it down the toilet, but my family would catch me in the act of doing it and would rescue the aid. It was not until I entered Clarke School in Northampton, MA at the age of five that I was wearing it every day or my FM system. The FM was really bulky too. However, I did very well with both the hearing aid and the FM system. I slowly began to acquire language and speech, as that was the route that my parents chose to pursue for me. I didn’t speak my first word until I was 3 years old and my vocabulary and speech really didn’t take off until I was 5 years old. However, I could lip read and follow simple commands since at a young age. I was at Clarke for five years before being mainstreamed into my hometown school system in Rhode Island.

I was in the public school system until I graduated . The only services that I received was speech therapy once a week. I continued it until I turned 18 years old, and I refused to continue the service during my last year of high school because I was not fond of my speech therapist. She had no experience with deaf children.  Because I was her first deaf student, she didn’t know how to teach me. She kept saying that I wasn’t trying hard enough, but I just couldn’t hear the sounds that she wanted me to produce. I was the only deaf child in my school system and that was a challenge for all of my teachers, as they didn’t understand how to accommodate me. They had to ask my parents several questions.  I did keep asking for a note taker, but I didn’t get one until my senior year in high school and only in Honors English. In spite of all the challenges that I faced; I managed to graduate in the top half of the class. I do not know how I did it.

I did go on to a college where I continued to face the same problems as I faced in high school. I had a hard time getting services that I needed to succeed. I was not allow to pursue certain majors because of the requirements. So, I became discouraged very quickly. I did eventually find a major at Rhode Island College, which was sociology, which allowed me to focus on the health aspect of the field. After graduation, I looked for jobs in the health field doing research. I almost landed two jobs: one with Brown University and the other with Miriam Hospital, but they both turned me down because I would have to do the interviews by phone and I had limited use with the phone with my hearing aids.  I was using the TTD , but the employer felt that would impede my ability to complete the work.  Fortunately, I was working in the nursing home field during my college days, and so, I continue to do it. I just continued to upgrade to more powerful hearing aids every five to seven years as the need arose.

In January 2002, my latest hearing aids are about 1.5 years old, and I was working the 2nd shift as a medication technician at my job in the nursing home in the middle of a cardiac arrest when my left hearing went. This was my dominant hearing and I was in a position where I was listening to the count and all of sudden everything sounded like I was swimming underwater on the left side—I said to myself, ” Oh great! Not now!”  I shifted my body to be able to hear out of my right ear and concentrate on the code. Right after the code was over, I changed the battery on the left hearing aid.  There was no change in the sound. I was panicking. Because it was Friday night, I had to wait until Monday to call my audiologist to tell her what was happening with the left side ear. She had me come in to check that side out. She tells me that the hearing aid is fine, but my hearing was not. I had no speech discrimination on that side, and there were signs of fluid buildup on that side. When I called my doctor to tell her about the situation, she put me on medicine. The medicine didn’t work.

Fast forward to April of 2002 when I had a cochlear implant evaluation — I passed the evaluation to become candidate for a cochlear implant.  The test determined that my left ear was the better ear. I scored only 14% bilaterally in sentences using both hearing aids. I had the surgery in June and was activated one month later. Wow what a difference!!! I started auditory therapy a few weeks later. In December, I met with the surgeon again to check on the left cochlear implant.  At that time, he asked me if I wanted to have the right side done. I told him that I was having the sound booth evaluation done in January,  and I would let him know after the test. It turned out that I had the same situation happening to my right ear, but I didn’t pick up on it because the cochlear implant overpowered my hearing aid. I asked about upgrading to a more powerful hearing aid for the right side. My audiologist told me that would be impossible because my speech discrimination had gone down to 0% on that side. I said, “Oh. Ok.” She said that because my speech discrimination with the cochlear implant was about 40%, I could go for bilateral cochlear implantation with no problems under the insurance guidelines. My audiologist faxed all of my stuff over to my surgeon. He then asked my insurance for approval. It was approved within a day. I went bilateral on April 21st, 2003. I was activated one month later. I was doing great for three months.  I scored 90% in words and sentences within two weeks after activation

August is when my cochlear implant world began to change.  I started to get pain and shocks on the right side only with the sound processor on and off. I knew something was wrong. I told my audiologist. Every time she tried to map the right side, I literally turned green. So she made an appointment for me to see my surgeon. He told me it was a mapping problem. I asked him to bring in a company representative to one of the MAPping sessions and maybe for an integrity test. He said no problem and go ahead. So, my audiologist called the company audiologist to set up an appointment.  I also got an appointment to get an xray of the implant. After the integrity testing, we shut off one of the grounding electrodes and tried to remap the implant. I still turned green but got through the whole process. That didn’t work, as I continued to get shocked and pain with the cochlear implant. I stopped wearing the sound processor in December.

In January of 2004, because a very good friend of mine encouraged me to get a second opinion on the cochlear implant, I called a prominent surgeon a few hours from me and got an appointment for the following Monday. I saw him and explained the whole situation to him.  He told me that I was going into soft failure with the implant, but he wanted his audiologist to try to map it. So, I set up an appointment with his audiologist and tried to wear his map for a week.  Because it didn’t work, I followed up with the surgeon by e-mail, and I was explanted and reimplanted 51 weeks after the original implantation of the cochlear implant. Since then, I have had no problems at all. No pain. No shocks. The scores are not as high, as it was when first activated. That is ok. What is important is that I can hear out of both ears and well.

I enjoy listening to music and am glad that I have bilateral cochlear implants and would do this all over again if I had to.  I would not miss this experience for anything in the world. I just wish that I could have done this sooner.

2 Comments

Deanna Davis

October 19, 2012 at 3:47 am

Thanks you for your experience, I have been turned on for one week.

Bunny

October 27, 2012 at 10:40 pm

Wow what an inspirational story!
I can so relate to your story, I lost my hearing at 18 months and was fitted with an hearing aid at 4 and half years. Growing up in a public school where i was the only child with a hearing aid and the teachers were not experienced with teaching an hearing disability. I felt alone and embarrassed having to be the only kid at school.
Fast forward I am now 50 years old and my hearing has gone extremely downhill in the last year. It has been really difficult for me that I don’t enjoy socializing in large crowds anymore especially at work when we have our weekly meetings that i do not look forward going. Sometimes it’s really hard to convince my employer just how much goes over my head but they want me to be part of the team.
I recently found out that I am a candidate to getting cochlear implant and doing all the researching as much as i can.
I enjoy reading different stories and would love to hear more. The joy of being able to hear again and to experience would be life long dream!
Please feel free to contact me.
Thank you.
Bunny