HH/Beck: Hi Doug, its great to speak with you again.
Lynch: Hi, thanks for the opportunity.
HH/Beck: I dont mean to embarrass you, but I do want to point out to the readers that you and I are on the telephone for this interview. Im in Texas and youre in California. Thats not unusual, but the fact that you are listening to me via a telephone line and your cochlear implant, makes this a little more challenging for you, than most of the folks I interview!
Lynch: The challenge is not using a telephone necessarily, its just that you need to use a speaker phone on your end to record this. But, but youre coming though fine.
HH/Beck: Very good. Would you please tell me a little about your hearing history before we get to your implant and your position at Advanced Bionics?
Lynch: Sure. As a child, I had no problems at all with my hearing. My hearing, as best I know, was 'textbook normal' as a youth. Then, in 1993, one month before I was to be married, I was 26 years old, starting my professional career, and my left ear went totally deaf. It was a sudden hearing loss and I went completely deaf on that side. The doctors later determined my deafness was due to an autoimmune inner ear disease. Not only did the hearing totally go out on the left ear, but also the vestibular function on that side went out too. About six months later, I had another attack, and it took out the hearing and vestibular function on the right ear. So I was totally deaf and had no peripheral vestibular system on either side. It was challenging!
HH/Beck: I cannot imagine how I would handle the frustration, the disappointment, the hearing loss or the balance problems. It mustve been terrifying and frustrating. Did the wedding go on as scheduled?
Lynch: Yes, it did. You know that humor and the right attitude are very helpful during times of despair and disappointment. When we were on the alter my wife said jokingly 'You take this sickness and health stuff very seriously dont you?'
HH/Beck: Doug, what was your profession at that time?
Lynch: I was just a couple of years out of college and I was the manger of membership services for a non-profit group in the travel industry. I was really trying to establish myself in marketing and membership services
HH/Beck: And Ill bet you probably spent the majority of your day on the phone at that point?
Lynch: Oh yes, communication on the phone was critically important. I relied entirely on my hearing as an essential avenue for communication and work, and to earn a living and establish a career.
HH/Beck: So once the phone was removed from the picture as a communication tool,
some 8 years ago, pre-dating instant messaging and most email communication, how did you communicate with your clients and contacts?
Lynch: Great question -- it was very difficult. Obviously after the left ear went out, I was still able to use the phone on the right ear. I thought of it as a new playing field, and one that was particularly challenging. Nonetheless, I was determined to go on and make it work. After the right ear went out, it was physically impossible. You know, like most people, I had never thought about hearing loss until it was dropped in my lap, and then all of a sudden -- total silence. I was the typical suddenly deafened adult. I was totally lost and my ability to connect with others was instantly severed personally and professionally. I recall thinking 'Here I am, less than one year into my marriage, and then this happens.' I was frustrated, devastated. The stresses and strains on a new and young marriage, and the stresses and strains on family members, and the direct impact on my ability to work in my chosen career was profound.
HH/Beck: So I must imagine that at about this time (1993 and 1994) you had some experience with hearing aids?
Lynch: Yes, I did. But it was very limited. My hearing loss at that time was 120 dB loss in both ears and hearing aids simply were not strong enough to be of use. Let me back-track a little. When the left ear went out, the doctors didnt know what had happened, they said 'cause undetermined.' When the second ear went out, they decided that they really needed to know what was going on. Over the course of a couple of months the diagnosis of autoimmune inner ear disease came forward. I went through a series of chemotherapy and other aggressive medical management in an effort to suppress the immune system from engaging in this attack, and also to stop the inflammation, which is the destructive part of the process within the inner ear. What really surprised me was that I actually did regain a little hearing through the medical process. The hearing in my right ear came up to about 75 dB. So, the medications were a little successful and after that I was able to use a hearing aid in that ear. While using the hearing aid, I was a little better able to navigate my world -- although it was very far from perfection. I realized at that time that I needed to refocus my professional career path and orientation and I went way into computers. I learned data base design and management in the mid 1990s so I could continue to work and interact with machines, as I realized my ability to interact with people was being taken away from me.
HH/Beck: Did the hearing in the right ear stabilize at 75 dB?
Lynch: No, actually it didnt. It was Christmas Day, 1994, and I went upstairs to take a nap. When I woke up 20 minutes later, the autoimmune system had kicked in again and I was totally deaf. I lost all of the gains I had made on the right ear. For a second time I was facing a 120 dB loss in both ears. Of course by that time, I had been through aggressive chemotherapy and steroids and all of the issues related to that, so I was in horrible, yet familiar territory and things were rather grotesque at the time.
HH/Beck: Had you learned anything about cochlear implants at that time? Had anyone mentioned it as an option?
Lynch: I had been told there were cochlear implants, and they were characterized as electrical devices that were crude and would barely give me an awareness of sound. I learned that the implant might provide environmental sound awareness at best and no speech recognition should be anticipated. I pretty much dismissed it and didnt explore it further at that point.
So I went back to aggressive chemotherapy, which was very unpleasant and highly undesirable, but I didnt see any other options. In fact, I was warned by my physicians that the chemo posed serious risks too, to my liver and other systems. So I had to weigh the issue of risking my life and health versus the possibility of a chemo cure for my deafness. I sat with my wife and family and in-laws at the dinner table and I told them I had decided to take the risk of chemo because to me, hearing was living. I said very clearly, that for me, if I didnt have the ability to communicate and to hear, then I could not be the person I had chosen to be. It was that serious. So I went forward with the risk and the side effects were indeed horrendous, and I did not regain any hearing. My body was wasting away, and my hearing was unaltered. My relationships with friends and family was crumbling and slipping away.
Therefore, really out of total desperation, I again investigated cochlear implantation. I was living in the Washington DC area in 1995, and so I went to Johns Hopkins University and met with a team of audiologists and rehab specialists and surgeons who characterized to me their experience with cochlear implants. I recall saying to the team at Johns Hopkins that if the implant could provide me with any sound at all, anything better than silence, then by all means, I was going forward with implantation. I had to wait several months to regain my strength from the chemo before I could undergo the surgery. Then, in the summer of 1995 I underwent a two hour procedure and was implanted with the first generation Clarion cochlear implant.
HH/Beck: What was the time lag between the surgery and the 'tune up' of the cochlear implant?
Lynch: It was one month to the day. As soon as the implant was preliminarily programmed, I went from the world of total silence, back to the world of the hearing. It was the difference of being in a small corner of a cold dark room, to stepping into a stadium of warmth, colors and light and people.
At one moment the audiologist turned to speak with my wife. Im a terrible speech reader, but I couldnt even see their faces so I had no idea what they were saying. As I found out later, the audiologist said to my wife 'OK, Im going to turn the unit on in a moment and well see where we are with this very preliminary programming.'
The audiologist flipped the switch on her computer. My wife said to me 'Doug, can you hear me?' And with tears in my eyes, elation and joy in my heart and I knew my life was again dramatically changed. It was the most glorious instant in time I can remember.
HH/Beck: That really is a phenomenal story and I thank you for sharing it. Nonetheless, I want to be certain to mention that every patient is different. You do extraordinarily well with your cochlear implant, but of course, there are no promises and no guarantees that all patients will do as well as you. Which device do you have?
Lynch: I have the Clarion 1.0 cochlear implant, implanted in my right ear.
HH/Beck: How often have you had the device tuned-up?
Lynch: After the initial tune-up, I went back for fine-tuning at 30 days, then again at 3 months and at 6 months, and then after that about once a year. However, its probably been two years since my last 'tune-up.'
HH/Beck: Would you consider having your left ear implanted?
Lynch: I really would like to get the new CII Bionic Ear technology. Considering how well I hear with the early generation device in my right ear, I can't imagine how well I could do with the new system. To your question, I would only consider implanting my left (deaf) ear because I sure don't want to mess with what works so flawlessly in my right ear.
Currently, bilateral implantation is not approved by the FDA and insurance reimbursement for bilateral implantation is not established like it is for unilateral implants. However, I do foresee a day when I might return to my audiologist and surgeon with a huge smile on my face!
HH/Beck: How does music sound through the cochlear implant?
Lynch: Excellent question. The ability to understand speech and voices in general is something that gets better with time. Implant users start out with sound, and the better the unit is tuned, and the more accustomed the patient is to the sound, the better they can use the sounds of speech to understand the words.
The same is true for music. At first music was terrible. As the years went on, and as I gained more experience listening with the cochlear implant, its now at the point where I really enjoy music and indeed, it sounds extremely natural to me. Im usually the first one in the family to go out and buy new CDs.
If you look at how the technology has advanced so rapidly, particularly regarding how it can represent so much more sound information from the environment, it makes sense that music appreciation is more common for implant users and I anticipate it will continue to get better.
HH/Beck: Can you detect individual voices through your cochlear implant or do all male voices sound the same? In years past, I can recall many times when cochlear implant users reported that all the voices sounded the same, and they all sounded like 'Daffy Duck.'
Lynch: Voices are clear and distinct. If you were to call me in a week, and if you didnt introduce yourself, Id know who you are. Of course, anyone who knows you realizes that you have a deep, low pitched and clear voice. But if I know the person, I know their voice as separate and distinct from other voices. Its important to underline what you mentioned a few moments ago -- everyone gets a different result. The outcomes range is wide and varied and indeed, I have had an extraordinary result. I was deafened for only a short time and I had intact language going into this. My story is similar to a lot of people, but each patient and each situation is different.
HH/Beck: Doug before I let you run, please tell me about your position at Advanced Bionics?
Lynch: After I was implanted, I called Advanced Bionics and told them I was deeply saddened that it had taken me so long to learn about the potential of cochlear implants and the life I could lead with a cochlear implant. I told them that I knew there were hundreds of thousands of people out there who needed to be educated about this issue so they could make an intelligent, informed decision and I told them I was going to take this on as my personal mission, but that I hoped they would support me. That discussion led to me coming to work for Advanced Bionics. My wife and I left Washington DC not knowing anyone in California, but we had a mission and a goal to accurately describe and communicate to people like me, what their options are. Its been several years since I joined Advanced Bionics, and I now serve as Director of Marketing Communications. In some regards, its a bit poetic in my opinion, that a deaf man like me is the communications director for a leading innovator in bionic devices. Its all tied to the fact that my cochlear implant has liberated my professionally and personally.
HH/Beck: Doug, if people want to visit the website for Advanced Bionics and explore the site and learn about the new CII Bionic Ear thats made by your company, whats the best address to visit on the internet?
HH/Beck: If you dont mind, can the readers correspond directly with you too for questions and concerns?
Lynch: Absolutely. They can write to me at firstname.lastname@example.org
HH/Beck: Doug, you are an inspiration and a joy to speak with. Thank you for your time.
Lynch: Its really been a lot of fun. Thank you for your time too!
Click here to visit the Advanced Bionics website.
HH/Beck: Hi Doug, its great to speak with you again.