I was chatting with a fellow who had read my book. We had a good laugh because we had both tried a particular alternative treatment and here I thought I was the only one who had given that one a go. (He had thought he was the only one too.) Then he told me he was disappointed in the chapter on Future Hope. I was a bit surprised because I like that chapter. So I explained that there are lots of non-medical treatments being developed and research studies going on. But I’m not psychic enough to give more than an overview. But his comment has been bugging me.
People with tinnitus or hyperacusis are often told not to use ‘What if’ thinking. What if it gets worse? What if I can’t cope? What if…? Well I have some ‘What If’ thoughts myself. They are about my hopes for the future of tinnitus and sound sensitivity worlds. I’m sure this won’t be the last time I write about them.
Almost 30 years ago I saw an ENT about my tinnitus. He told me nothing could be done. I should just learn to live with it. When I told him it was really bothering me, he said “if hearing loss is like having no feet, then tinnitus is like having no shoes.” And that was supposed to help me with the screeching non-stop noise in my head? Lately when I go into on-line T-H world people are still commenting they were told “nothing can be done”. It’s 2010 people! Things are changing too slowly for my liking. Here are a few of my “What if” thoughts.
What if: People are told “nothing can be done medically but there are effective non-medical treatment tools available.” By the way, if your ENT says “nothing can be done” that’s actually good news. It means you don’t need treatment for a medical condition involving your hearing system. Ask for clearance to go ahead with non-medical treatments. If your doctor or ENT says you need medical treatment, you might still need non-medical treatment for T or H. Again ask for clearance. Take the next step (hearing/T/H evaluation). The right direction is better than no direction.
What if: People go to have a hearing/T/H evaluation and afterwards the audiologist goes over all the non-medical treatment options along with some guidance so that each person can then decide which T/H Management option they want to choose. Again, it’s 2010 people. We have choices. I see comments online about people almost automatically referred for formal therapy (e.g. maskers or TRT). This is usually by some ENTs. People with T/H couldn’t manage without ENTs on their team. With huge respect, it’s the ENT’s wording during their counselling that I have trouble with. Some people don’t even seem to know what maskers or TRT even are before ending up on a waiting list. People here still get that advice too. Don’t you want to know about all the options before deciding? Maybe maskers or TRT would be the best thing for you. But what if another option speaks more directly to your individual needs? I’m biased towards the importance of audiologist involvement when people are deciding what approach they want to take. Audiologists have at least 2-3 years of post-graduate education and training on anatomy, function, evaluation and non-medical therapy for only 2 head holes. Audiologists are qualified to provide thorough evaluations for hearing/tinnitus/sound sensitivity. Based on evaluation results, audiologists are qualified to provide education and counselling on hearing/tinnitus/hyperacusis, as well as provide non-medical therapy approaches as needed. Audiology clinics are fairly widely available at least in North America.
From what I know of T/H non-medical treatment in other countries I don’t think it’s all that different to what’s going on in British Columbia.My province of BC has a population of 4,455,207. It is 947,800 sq kms (365,946 sq miles): this is 3.8 times the size of the UK and more than the states of California, Oregon and Washington combined (thanks cherrybouton.com for those stats). There are 2 (yes only 2) tinnitus clinics with tinnitus specialists in BC and both are in the same city. They do excellent work. But what do people do if they don’t need or want formal therapy? What do people do if they can’t afford the cost of formal therapy or the travel costs? What do people do if they can’t get to formal therapy? This is where audiology clinics can and should help people manage. Knowledge is power. There is a choice of non-medical treatment tools available. Are you getting the knowledge you need to make informed decisions about T/H management tools?
What if: People educate their care providers on what we want or need. What if we all started only going to people who care? I’m not talking about tinnitus specialists. They know and they care. But what about your doctor or your dentist or even in some cases your audiologist? I went to a dentist for a lot of years. Then he sold his practice to a new dentist. At first everything seemed fine. Then ultrasonic teeth cleaners came in. The hygienist told me she was going to use it. I stopped her after I think 1 second. This thing was bone conducting sound right through my skull and it was loud. I asked her not to use it. She cleaned my teeth manually (you know, with all those scary picks and things they use). I thought I was in the Spanish Inquisition. It was like a million tiny needles were suddenly attacking my mouth. Afterwards I went and researched ultrasonic cleaners and I found out they can aggravate T or H. So I was right to refuse it. But being the die hard optimist that I am, I went back for another routine check-up. Spanish Inquisition again. That was the last time I ever went back to that dentist. My new dentist has a lovely hygienist. I barely know what she’s up to.
I know somebody else who went to get hearing aids. They got the tiny in the canal snug fitting unvented (no air flow) hearing aids that they asked for. Then they couldn’t stand their tinnitus. The hearing aid provider fit based on their hearing loss but not based on their hearing loss and T. What if we stopped putting up with this type of thing? Are you wasting time with a provider who doesn’t care enough to take your T or H into consideration?
What if: T world and SS world became a better place for us?
Jan L. Mayes MSc writes horror fiction and non-fiction, and is an international Eric Hoffer Award winning author, blogger and audiologist specializing in ghosts, noise, tinnitus-hyperacusis, hearing health education and plotting murders. Her writing has been featured at Tinnitus Today, Communique, silencity.com, The Right to Quiet Society, and The Horror News Daily.