By, Cathy Bell
Hello there! To understand how I came to have two cochlear implants, I will need to give you some background about myself. Hopefully, people out there, who are without normal hearing, will realize that cochlear implants can be a viable option.
I think I was born with a hearing loss and don’t know if I came into the world deaf or if I lost my hearing soon afterwards. Anyways, my parents realized that I had very little hearing in both ears when I was three years old. The doctors diagnosed me as having a moderately severe hearing loss in both ears. This is the medical term used anyways. I am 64 years old now and back when I was three, hearing aids were big and bulky. I received two body hearing aids and I wore straps with pockets to hold them. Behind-the-ear models were not in existence back then. Luckily my parents were wonderful, and I weathered this storm well. I have no idea why I was born hearing disabled. Life happens… During my childhood, I had a lot of earaches and can remember putting a heating pad on my ears. I have nerve damage which is the loss of the hair cells in the cochlea.
I went to regular schools because initially, I could hear well enough with two hearing aids. I was the firstborn, and my mom was gung-ho to help me excel in school, and she did a lot of schoolwork with me. My mother made sure I could do the homework and helped me with English, Math, and whatever she could. I was usually a good student and had a strong B+ average overall in public school. My mother also made sure that I had speech lessons. I went to see Dorothy Scott once a week for speech therapy. I went to see Dorothy from the time I was three to the time I was about 10 years old.
However, this soon changed… after grade 6 my hearing began dropping further. My hearing aids were whistling all the time because I kept turning the volume up as high as they could go to understand what people were saying. Going to school was much harder and I would often mishear the teachers. I no longer trusted what I thought I was hearing and double-checked everything in the textbooks. So naturally, my homework took far too long, and my grades were going downhill. I don’t remember failing any classes, but I was no longer thought of as having potential.
High school was the most exciting, depressing, happiest, and frustrating time of my life. Back then in the early seventies, there were no FM systems, no note-takers, or cochlear implants. Plus, I developed mild social phobias which were so not helpful. Luckily other than being prone to acne, I was physically healthy. I compensated for my lack of social life by going on long bike rides, playing tennis, and jogging. High school was wonderful for the team sports. I am seriously not athletic as I get nervous easily and tend to flub up at critical moments in team sports. However, I did manage to play on the tennis team in high school and I had some friends who played tennis. By that time my hearing loss was profound in both ears.
I was not taught sign language as my parents and Dorothy thought that this would hinder my speech development. So, I did have good speech but terrible hearing. This combination created all sorts of problems for me as I developed my career, because people would tend to ignore my hearing loss. Sometimes, they would ignore me, and I did not much care for this. People could not tell from my speech how little I was really hearing. I likely did not know when I was mishearing either! Plus, I likely raised my voice at times because I could not gauge how loud to talk, and unfortunately, this is not socially acceptable. My feeling is that a hearing loss is one of the disabilities that will render little understanding from people.
So, what did I want to be when I grew up? I had no idea. In my teens, I was just trying to survive being profoundly hearing impaired. The thought of nursing appealed to me, but this career path was not possible. I ended up going to Ryerson University for Laboratory Science. I was going to be a laboratory technologist. To get through, I used an FM system and did a lot of studying. Towards the end, I went to school part-time, and this helped me to graduate. I worked on and off as a laboratory aid /technician/technologist for about 12 years. Eventually, I found myself more frequently out of work, as my skills became redundant. So, I went back to school in 1996. I went to Sheridan College for Computer Science Technology and wonders! the school had an accessibility department designed to help students with disabilities. The counsellor there, Beryl, really zeroed in on what I needed. I received a new FM System and after the second year, I also had a notetaker. This sounds like a lot, but at that point, I had great trouble following the class even when sitting in the front row. FM systems often break down and it takes a while to get them fixed. In theory FM systems sound like a great idea, but I did not find them that useful. However, the notetakers were wonderful. All this extra help allowed me to graduate with a diploma in Computer Science Technology Co-op in 2000.
In 2000 I had an appointment with Dr. Nedzelski, an otolaryngologist from Sunnybrook Hospital. I was seeing him about some tinnitus in my ears. As he is a specialist, I had to get my family doctor to set up an appointment for me. Fifteen years earlier, long prior to the appointment, I had been given Dr. Nedzelski’s business card by a friend, and I had that card in my purse ever since. I had not gone to an ear nose throat doctor since my teens as they could not help me. But boy was I wrong. It turned out that Dr. Nedzelski was head of the Cochlear Implant Program at Sunnybrook Hospital. He told me that I was a good candidate for a cochlear implant (CI). I was ecstatic at this news! At that time, there was a year and a half waiting list for a CI, and I finally received one in my right ear in 2002. Very basically, the two-hour operation consisted of implanting a receiver just under the skin above my ear and inserting a very fine electrode array inside my cochlea. Back then the operation involved an overnight stay at the hospital. I think I had to wait a week or so for the stitches to come out and then another couple of weeks for the audiologist to program the implant. Then I started to hear in my right ear!
There are several brands of cochlear implants such as Cochlear Corporation, MED-EL, and Advanced Bionics. I received the brand Cochlear which has an electrode array of 22 electrodes. Basically, when an audiologist programs the implant, she connects the CI processor to a computer for mapping via a cable. The patient is wearing the processor and listening. Using a series of beeps, she sets the T- and C-levels for each electrode. The C-levels are the comfortable loudness levels that are tolerable for a CI user to hear. The T-levels or thresholds are the softest sounds the CI users can hear. Because of the placement of the electrode array in the ear’s cochlear, the higher-pitched beeps will stimulate the electrodes towards the outside of the cochlea and the deeper-pitched beeps will stimulate the electrodes further in the cochlea. These electrodes send sound information to the brain.
It took me several months to start hearing well out of my right ear. It takes time for your brain to learn to listen again. Sometimes a tweak in the mapping also makes a difference. Be prepared to visit your audiologist several times over the first year. All that I can say is that for me, it was the most exciting time of my life, receiving better hearing. OHIP will pay all of the initial costs associated with your first cochlear implant. There may be costs to you, associated with maintenance over time, such as replacing the processor filters and upgrading your processors every 7 to 10 years or so. However, there are supports in place such as the Assistive Devices Program (ADP) to help with expenses. I personally think the advantages outweigh whatever cons there are.
To give you an idea of how my right ear improved, when Sunnybrook hospital tested my hearing before the operation, I got 0 out of 10 for an isolated word test in quiet. Isolated words are usually one or two-syllable words such as cat or map or ground etc. They are extremely difficult to understand or hear because there is little sound info to decipher the word. After my CI, I would average six or seven out of ten on these tests. A person with normal hearing will get ten out of ten. My understanding in sentence tests went from maybe getting thirty percent correct to about eighty percent correct. Of course, the results are going to vary from person to person but most people with cochlear implants have greatly improved hearing. There is one caveat, most CI users do not do well in noise, myself included.
At this point, I was thrilled to have a cochlear implant in my right ear. I was encouraged to wear a hearing aid in my left ear to prevent further nerve deterioration. During this time, I was working at RBC on contract as an IT person/ programmer but was eventually laid off. A year later I found work as a software tester at a company in Guelph. Because of this job, I was able to save up some money for a second cochlear implant. I knew that hearing-impaired children were receiving two cochlear implants at Sick Children’s Hospital in Toronto, and I wanted one for my left ear. It was frustrating to me that very few adults received two cochlear implants in Ontario.
My life changed when I read a series of articles in the Toronto Star newspaper about medical tourism. Apparently, adults can travel to other countries to have a medical procedure done at reduced cost. I googled medical tourism and discovered that India has a booming medical tourism trade. This was back in 2008. I got in touch with Samridhi S. Chodha, CEO of Medical India Treatment. She put me in touch with a doctor who did cochlear implants, Dr. Ameet Kishore. I emailed Dr. Kishore back and forth over the spring and began to feel that it was possible for me to get my second CI in India. So, we set the date for September 2008! I was interested in India because many people there can speak English and the surgery costs were low. As well, India is highly educated and advanced in many areas. I did try to get an “at cost” CI operation done in Toronto. But the Ontario government was dragging its feet on the decision, so I gave up on that. Before I went, I did confirm that the Sunnybrook Cochlear Implant Program would service my second CI. I need not to have worried; they were great about my going to a foreign country for a second CI. Apparently, this has happened before. Back in 2008, my operation cost me $29,900 in India. In Canada, in 2008, OHIP was billed around $50,000 for a CI. In Canada, I was also able to get a medical tax deduction for about 25% of the cost. I still had to pay for airfare, hotel room, and meals. Luckily for me, my mother came as my travel companion. This gave me some assurance.
I am very grateful that I am a bilateral cochlear implant recipient. Two cochlear implants make listening much easier and not so tiring. My hearing test scores are now similar in both ears, and it is slightly easier to hear in background noise.
Thanks to the advances made with cochlear implants, hearing-impaired or deaf children and adults, have many more opportunities ahead of them.
