Margo Klug’s Story: Hearing with cochlear implants since 1989

October 18th, 2012 by | Tags: , , | 1 Comment »

Margo lost hearing in her left ear when she was a child and then lost hearing in her right ear as an adult.  She first received her cochlear implant in 1989.  Today, she is a bilateral cochlear implant recipient.

I consider my bilateral cochlear implants rich blessings in my life.

My cochlear implant history goes way back to 1988. In December of 1988, my husband and I went to a Cochlear Implant Forum in Grand Rapids, Michigan that changed the course of our lives.

In 1988, I was 36 years old, married, and the mother of four children ages 5 to 12. I was also deaf and had been for 11 years.  I had lost the hearing in my left ear after a car accident when I was 2 years old and lost the hearing in my right ear from a virus when I was 25 years old. I had a hearing ear dog who alerted me to specific sounds, and used sign language, finger spelling, speech reading, and note taking to help with communication with family, friends, and strangers.  My children and husband were great about helping me with communication when needed but my deafness was frustrating for everyone at times, including me. Communication was not easy and I was often fatigued by the end of the day. My husband and I were fruit growers and my deafness created challenges when dealing with our peach and apple customers.  I used a tty for some phone communication but that was limited to other people who had a TTY. I truly believed that it would be Heaven before I would be able to hear again.

I still remember going to the Cochlear Implant forum in December 1988. Although I was interested in the technical details of a cochlear implant, what I really wanted to know was how it impacted a person’s life. At the meeting, I met a cochlear implant recipient named Ruth, who was so patient with me and answered all of my questions, which was wonderful. At the time, there was so little information to be found on cochlear implants and definitely no internet like we have today.

Ruth and I continued to correspond via letter and tty. She introduced me to two other cochlear implant recipients, one in Chicago and one in Texas. I truly was fortunate to have such great ladies, who mentored me about the cochlear implant process and what to expect. We later called ourselves the “bionic sisters”.

I went to see my ENT in January 1989 and asked him about whether he thought a cochlear implant would help me and he said no. He felt that I was too deaf to have a cochlear implant. I went ahead anyway and scheduled an appointment at the University of Michigan cochlear implant department. I felt that I had nothing to lose and wouldn’t know unless I tried. I chose University of Michigan since they had a cochlear implant research department and were on the cutting edge of cochlear implants and because they had already done 70 cochlear implants. The other centers in the state had only done 1 or 2 cochlear implants and I felt more comfortable going to a cochlear implant center that had solid cochlear implant experience and expertise.

At University of Michigan, I had to undergo a number of tests to determine if I would be a candidate including CT scan, psychological testing, hearing tests(with and without hearing aids), physical exam, and the promontory test. I failed the hearing test, which was no surprise but this time, that was great news. In 1989, one had to be profoundly deaf in order to qualify for a cochlear implant. No additional problems showed up with the other tests and I was deemed healthy enough to undergo cochlear implant surgery. The promontory test basically was done to see if my auditory nerve would respond to electrical stimulation. My ears were given a numbing medication and a fine wire was inserted into the ear, which was connected to a machine. I will never forget that “whispery, butterfly wings sound when my right ear was stimulated and the joy it brought my heart as that was the first true sound I’d heard in over 11 years. It wasn’t functional sound but gave such hope that I would be a good candidate for a cochlear implant. My husband and I were cautiously optimistic about my having a cochlear implant. It was wonderful to share my joy and hope with the ladies, who had been mentoring me and who had become friends as well.

The whole process from consultation to actual cochlear implant surgery on May 3, 1989 took about 6 months. Half of that time was spent waiting for insurance approval. During that time, the hope of a better, hearing tomorrow kept me going. I chose the Cochlear brand of cochlear implant, the N22 as it was the only one with FDA approval and the AB “Clarion” was not yet available except for research. I will always be thankful to my “bionic sisters” who paved the way and who guided me well.  Being well informed allowed me to answer other peoples’ questions about cochlear implants. The biggest concern many people had was whether I was being cautious enough about having an elective surgery when I was the Mom of four children, who would be motherless if something happened to me during surgery. I had to reassure many people of the safety of cochlear implant surgery. It was understandable that people had concerns as there was so little information available on cochlear implants.

My cochlear implant surgery on May 3, 1989 went very well and outside of a temporary loss of taste and numbness on that side of the head, I didn’t have any problems. It was done as an inpatient surgery and I stayed in the hospital until May 5. Back then a lot of hair was shaved as a result of the large “C” shaped incision, which was the standard incision at the time. I prepared my family for that and afterwards I wore bandanas to cover up my rather lopsided looking hairstyle until my hair grew back.

The hardest part was waiting until June 1 for the two day activation. It was a month filled with dreams and hopes of being able to hear my family in the future. I had no fears about the whole activation experience as well due to being so well informed.

When I think back to activation day on June 1, it was a day to remember. My husband, 4 children, my hearing ear dog, my Mom, and my brother all joined me in the small cochlear implant audiologist’s room at University of Michigan.  Programming took time but it was so thrilling to be able to hear each beep of each individual electrode.  Upon activation, there wasn’t a dry eye in that little room as I was able to hear, albeit with an “underwater quality” to sound and there was not much difference in the tones of my family’s voices but oh what joy to be on my way to learning to hear via a cochlear implant. I was truly amazed at how noisy the world was and by the end of the day, I was exceptionally fatigued.

Ruth, Pat, Margo, and Muriel – The Bionic Sisters – March 1990

It took three months for voices to normalize, which was pretty normal back then. I continued to have noticeable improvements in my cochlear implant skills over the course of that first year. Again my “bionic sisters” really helped me to have realistic expectations and they taught me how learning to hear would be a process or journey. At the time, only children had formal auditory rehabilitation. It was rare for adults to have auditory rehab. So, I was exceptionally fortunate that I had my bionic sisters to provide tips on what worked for them in terms of auditory rehab.The N22 had a microphone that sat on the ear, a coil with a magnet (to connect to the internal receiver) and cable to the microphone and another long cable to connected to the WSP body level processor. I often wore the WSP in a pouch on a belt around my waist. It was too heavy to be put in a pocket of a dress or skirt.

I practiced listening daily with my cochlear implant. My children often were my teachers as I learned to recognize sounds and “repetition” was the name of the game. My daughter was learning to read at the time and we combined her learning to read with my learning to hear.  My “bionic sisters” continued to mentor me and encouraged me to start listening to familiar music and to start using the phone. Music sounded horrible initially and required an enormous amount of repetition and daily listening to get it to where it sounded good. Again my bionic sisters really helped me with lots of music listening tips and with lots of encouragement and recommending repetition and patience. A girlfriend volunteered to help me learn to use the phone again. The idea of using the phone scared me but I was willing to work on that skill. At

Margo talks on the phone with WSP connected to phone via a special phone cable.

first, I would call my girlfriend and she would answer questions with either “yes” or “no” and I would repeat her response back to her. Oh, how I sweated when I would use the phone. It took several months of daily practice to get where I could hold a conversation on the phone comfortably and be able to answer questions that callers would ask of me. In order to use a phone, there was a special phone adapter with a cable that went directly into the WSP processor and also into the phone line.  Learning to hear in various situations definitely was a process and as my cochlear implant skills improved, my confidence in listening soared.

In January 1990, I was able to upgrade to a newer speech processor, the MSP, which helped to improve my cochlear implant skills. The newer processor was also lighter and smaller and was easier to wear. I was and still am very blessed that Cochlear believed in making newer cochlear implant technology backwardly compatible to older cochlear implant technology. As a result, I’ve had 7 speech processor upgrades in the 23 years I’ve had cochlear implants. Compared to today’s behind the ear speech processors, my WSP, then MSP, then Spectra, and finally the last of my body level processors, the sprint ,were huge. I get a chuckle out of people today when they describe how big the Freedom or N5 speech processors are-little do they know how big the speech processors were in the past. I would have worn a speech processor the size of a suitcase if that is what it took to be able to hear.  I love how cochlear implant technology just keeps getting better with each generation of cochlear implant speech processor. My body may be aging but my two cochlear implant ears will be forever young and improving.

New MSP processor on left and WSP on right – Jan. 1990

In 1997, after eight years of having my N22 cochlear implant, I started experiencing problems with clarity. At first it was just a couple of electrodes that had shorted out. My incredibly talented cochlear implant audiologist did some creative mapping and that helped for awhile. In May 1998 at my annual mapping, more electrodes had shorted out and my cochlear implant audi did even more creative mapping. Unfortunately by August, sound clarity was getting very bad and it was difficult to recognize environmental sounds. It was then that my cochlear implant audiologist recommended that I get re-implanted. I was all for getting re-implanted as I missed not being able to hear as well with my cochlear implant and considered it to be my “re-tooling”. It took three month for insurance to approve re-implantation, which took place in November 1998 with the N24 system and I was activated to the sprint processor in Dec. 1998. It was pure joy to be able to hear again upon activation.

WSP speech processor – June 1989 and N5 speech processor – June 2012

As a child growing up, I always wanted to hear with two ears like everybody else. That didn’t change when I got my first cochlear implant. In 1989, one was fortunate to be able to get one cochlear implant and have insurance cover the majority of the cost. Over the years with my first cochlear implant, I would periodically talk to my cochlear implant audiologist about getting a second cochlear implant. In 2008, my cochlear implant audiologist gave me the go ahead to go through the cochlear implant process with my other ear, but with reservations. That ear had been deaf since I was 2 years old, over 56 years, which made it a rather long shot for having lots of cochlear implant success. I was able to convince my cochlear implant surgeon to agree to implanting that ear telling him that I would be happy no matter what the outcome and that I would work hard in rehabbing that ear so that it would be able to perform to the best of it’s abilities.

I was implanted with the Freedom system in that ear in November 2008 and activated in December 2008. I was overjoyed to be able to finally hear out of two ears, albeit two cochlear implant ears. That ear felt sound initially and the rehab process was a long and slow one.  It took a lot of practice, patience, perseverance, prayer, and keeping a positive attitude when rehabbing that long term deaf cochlear implant ear. It has been a labor of love and well worth the effort. That ear has surpassed what my cochlear implant audiologist and cochlear implant surgeon expected it to be able to do. It does remarkably well on it’s own although the sound quality is not as beautiful as the older cochlear implant ear and I do not use that ear with the telephone as it takes too much concentration.

Margo learns to listen to music. – June 1989

What is such a blessing is that I hear better with my two cochlear implant ears, even though one ear is not as skilled as the other, than I ever did with the older, higher functioning cochlear implant ear. My world has a vibrance and a richness that I love. Music sounds richer and I’m able to hear more of the details in music than I could with my older cochlear implant ear. I love how I’m more accurate in locating sounds with two cochlear implant ears. Is it any wonder that I’m truly filled with double cochlear implant joy daily!

I am richly blessed with my bilateral cochlear implants and with the incredible 23 years of cochlear implant hearing that I’ve had.  The cochlear implant technology has improved so much over the past 2 decades. It is also great that people looking into cochlear implants today have a lot more resources than I did in 1989. I will always be thankful for all of the encouragement and guidance that I received from my bionic sisters over the years. They have a special place in my heart.

1 Comment

Carol Burns

October 20, 2012 at 9:25 pm

Margo and I met at the SHHH Convention in 1990 at Little Rock AK. On the way home we discovered we were on the same flight to Chicago. We asked the stewardess if we could change seats so I could sit between Margo and Ruth to compare what we heard. I am sure we educated alot of folks that day listening to our comparisons. Anyway, seeing how Margo and Ruth improved hearing thru upgrades in the processors of the day made me decide in 1995 while eating with them in a mess hall at the Dallas SHHH Convention . They were hearing each other and not looking at their faces while I sat with my food untouched trying to speechread through the loud din of the event. I went home from that convention and told my audiologist I was ready to pursue a cochlear implant despite the fact my insurance had a exclusion for the surgery. I was finally implanted in Nov. 1996 while participating in the FDA clinical trials for the CI24 at U of Iowa with Dr. Bruce Gantz. To these pioneering ladies I am so grateful!