Two Days of Learning Helped Me ‘Own’ My Tinnitus of 20 Years
By David Strom
I have been living with tinnitus for 20 years, but, until last year, I didn’t “own” it. What does “owning” mean? It means that you control it, rather than allowing it to control you. Before I tell you how I came to own my tinnitus, a little background.
In 1998, I was experiencing intense dizzy spells and was diagnosed with Meniere’s disease. Many of you have heard of or lived through what follows: dietary changes, a series of unsatisfying visits to various medical doctors, and a great deal of frustration – back then, it wasn’t easy to do internet research. Eventually, my attacks stopped. What I got out of that experience was a case of tinnitus.
My situation is a bit unique: I have been deaf in my left ear since birth. My right ear hears just fine – except for this continuous tone that sometimes is louder, sometimes is softer, but always is there. Over the years, I have learned to deal with it, but owning it? Nope. Sometimes it was more than annoying, especially when I was in crowded, noisy rooms or restaurants. Sometimes I would hold a pity party for myself. Once, I attended a professional conference with about 300 people. We were seated at very long tables for dinner, and the noise was deafening. I quickly ate my meal and ran back to my room, in pain from the noise. I know it looked odd to my dinner companions.
I have been a member of the American Tinnitus Association for most of the past two decades and appreciate the amount of knowledge the association provides to its members to help us understand and cope with this chronic condition. But even then I didn’t own my tinnitus. That is, until I went to the University of Iowa’s International Conference on the Management of the Tinnitus and Hyperacusis Patient1 last year.
Known as the Iowa Conference, it is a small gathering of fewer than 100 people, including the speakers. Despite its size, it is a very full two days. Professionals, including nurses, medical doctors, researchers, and audiologists, make up 90 percent of the audience with a few of us patients scattered in and allowed to participate.
It was very worthwhile, and I want to describe some of the things that I learned during the event. I was surprised at how much I didn’t know. And, it wasn’t just learning medical jargon, but actual, actionable, useful stuff that helped me begin to own my condition.
First I learned that “owning” my tinnitus means I control it, rather than allowing it to control me. You aren’t defined by your tinnitus, you aren’t at its mercy, and you manage your own treatment and your own response to it. The noise you and I hear may be all in our heads, but we have to use our brains to figure out a way to cope and live our lives. Many of the stories in Tinnitus Today carry this theme, but for some reason I didn’t really understand what they were getting at until I was sitting in the conference, listening to various presentations. Then it all clicked, so to speak. (Sorry for that pun.)
Here are a few things I heard and took away from the event:
Although I knew that tinnitus is different for everyone, I didn’t realize how different it is. Meeting others who have it and hearing their stories helped me to understand its individuality and the different paths that patients have taken to understand and cope with tinnitus. When you see the breadth and depth of research being done around the world, you begin to understand this is a huge problem – or many problems – to solve. You can get some of this insight and understanding by attending tinnitus support groups, too.
Another thing I liked about the Iowa Conference was that you get to put yourself in your doctor’s shoes and see tinnitus from his or her perspective. This is helpful in understanding how they will treat you and respond to your needs and concerns. Several audiologists, therapists, and other professionals made presentations. As a patient, I could appreciate their different points of view.
Meeting some of the ATA staff and board members who attended the conference (ATA is one of the sponsors) also was a treat. It helped to put a face on the organization and gave me an opportunity to thank these people in person for all their hard work in helping us.
The conference is also a good place to get first-hand knowledge about cutting-edge research, particularly by the University of Iowa team, which has been involved in tinnitus work for decades. By the end of the two days, you feel like you know these folks quite well.
At the conference, vendors presented their devices and explained how they are used and for whom they are intended. During one of these sessions, I learned that hearing aids are used as a way to manage tinnitus, even if you don’t have much in the way of hearing loss. They can be programmed to block out the frequencies that you think you are hearing with your tinnitus.
Now, I know I am a bit of an unusual situation – no hearing in one ear, and the opposite in the other. Not to worry: there are specific kinds of hearing aids for this problem. Years ago, I investigated using a bone-anchored hearing aid (BAHA), which involves implanting a microphone in the side of your skull (in my case, the left side) and transmitting the sound through your bones to your hearing ear.2 When I tried on the sample hearing aid back then, I could actually hear stereo and locate the source of the sound coming from behind me – both of these for the first time. I opted not to use the aid then. But the advances in technology, especially in digital signal processing, are significant. Now there are wireless contralateral routing of signals (CROS) aids that can work with your cellphone via Bluetooth connections.3
At the conference, I talked to audiologists who worked with both BAHA and CROS aids and heard their first-hand experience. Access to that kind of insight is nearly impossible as an ordinary patient.
As patients, we tend to interact with the medical-industrial complex when we have a problem: we break a bone, we want it fixed. We have an infection, we want to get rid of it. But the single-point-of-contact-with-our-doctors method doesn’t work with a chronic condition, such as tinnitus (or Meniere’s or whatever). Research is ongoing: new drugs, new procedures, new devices, and so forth change and evolve the approaches available. Patients aren’t watching the medical literature like our doctors, because we are busy living our lives. And even if we are willing to put the time into doing internet research, we aren’t going to medical conferences and learning about many of the latest technologies and techniques.
Until I attended the Iowa Conference, my knowledge of tinnitus was limited to what I read in this magazine. That is great, but it can’t provide me with everything that is going on in the tinnitus world. The Iowa Conference can quickly bring you up to speed in a way that doing your own net-based research or reading a medical journal article – even one intended for patients – can’t do easily.
Now, most medical conferences are way beyond my skills and knowledge (or so I imagine), and probably yours as well. Understanding the jargon of the different parts of the human body alone is daunting enough. The Iowa Conference certainly had its moments when I was totally lost. But it had plenty of other moments when I got useful information that was clearly explained and in terms that any layperson could understand.
If you can, put Iowa City on your calendar and plan on attending the conference. You will be welcomed, and you might have the opportunity to understand more about our common affliction. The cost is minimal for the benefits I received.
David Strom is a freelance writer and professional speaker who lives in Saint Louis and writes for various technology business publications and blogs. He can be reached at firstname.lastname@example.org.
1 For more information on this year’s conference, visit https://medicine.uiowa.edu/oto/education/conferences-and-events/international-conference-management-tinnitus-and-hyperacusis.
2 Johns Hopkins Medicine. (n.d.). Baha – the implantable hearing device. Retrieved from https://www.hopkinsmedicine.org/otolaryngology/specialty_areas/hearing/hearing-aids/baha.html
3 American Academy of Audiology. (2015, June 29). CROS and BiCROS hearing aids. Retrieved from https://www.audiology.org/news/cros-and-bicros-hearing-aids