“Does anyone in your family have a hearing loss,” the doctor asked.
“Yeah my 80 year old grandma.” That didn’t count.
“Have you been around a lot of noise; rock concerts, hung out around airports or went hunting a lot?”
“I’ve been to three concerts, I went hunting a handful of times with friends as a kid but never hung out at airports.” None of those counted for the amount and kind of hearing loss I had at 23 years old.
“It’s just one of those things then. I don’t know why you lost your hearing.”
Over the next fives year, two more doctors would tell me the same thing. “We don’t know why you are losing your hearing,” and it bothered the hell out of me. I wanted to know why.
Some years later, another doctor suggested it might be auto-immune hearing disorder but it wasn’t backed up due to foul ups with referrals during the whole HMO process along with doctors not communicating with each other. I didn’t pursue it after doing a little research because the treatment was immune suppressants and steroids, yuck. At last I had a possibility of why and my roaming mind settled down. I could now tell people, my hearing loss might be auto-immune related. Between the doctors and the HMO, the experience left a bad taste in my mouth and I haven’t been to an ENT since the late 90’s.
Doctors aren’t high on my list and I lost respect for them over the years. They waste my time keeping self-inflicted, impossible schedules and rarely take time to get to know me. Every 15 minutes they have at least one person scheduled. If I kept my appointment book like that as a hairdresser, clients would walk away in droves. There are hair emergencies just like the health emergencies and clients will put up with it from time to time but doctors do it to us all the time. (Maybe we should rebel and start charging doctors for our wasted time?)
Once I showed up early at a new office to fill out the appropriate paperwork and the office was packed. Mine wasn’t an emergency appointment and made well in advance but looking around, I knew I’d be losing money taking the time off work. Already irritated, one sheet of paperwork asked me about my personal health history along with my family’s. Out of curiosity, I marked everything wrong to see if my time was further wasted with this exercise.
After 45 minutes in the waiting room past my appointment time, and another half an hour of waiting in the examining room, the doctor came and sat down. He looked at one page in my chart (I suspect to see if I had health insurance), he barely glanced at me while asking a few questions, wrote the prescription for my asthma inhaler and was out of there in ten minutes. What a huge waste of my time! And another chunk of respect lost for doctors.
Luckily the internet provides lots of medical information and there’s plenty of opportunity to meet people who have been through the same thing, like hearing loss. Questions can be answered without stepping foot in the doctor office, reserving that for the times I need antibiotics only. The internet also gave me the SWC where I met lots of people with hearing loss who experienced the same thing I did. “We don’t know why you are losing your hearing,” and they were just as frustrated as me. I even met a few people diagnosed with auto-immune and in talking with them, I carefully considered the path I wanted to take, which not pursuing proper referrals and the treatment.
The urge to know why isn’t white hot anymore but that doesn’t mean I don’t wonder from time to time. Is it auto-immune hearing disorder or something else? While doing research for various projects on hearing loss over the last year, I ran across information about childhood illnesses the doctors never asked me about. I had mononucleosis at 11 (before I started kissing the boys) which is known to cause hearing loss. Is this new information or did the doctors not take enough time to get to know me? At 14 years old I had scarlet fever – also known to cause hearing loss. There’s also a link between allergies and hearing loss and I’ve had major allergies all my life.
Could all this add up to a why? Looking back, I think scarlet fever may be the culprit in a combination ways. Before scarlet fever, I was sick every month or two. If it wasn’t something odd like above, it was strep throat, tonsillitis or bronchitis. My poor parents had me at the doctor several times a year. After scarlet fever, it all reversed and I hardly ever got sick. Over active immune system??? Or maybe it was the scarlet fever itself?
It was not long after that, I started asking for repeats more often, couldn’t hear from back seats of vehicles and walked right by people who tried talking to me. Since it’s a progressive hearing loss, I’m not sure that’s answer either. In all likely hood, the cause of my hearing loss will stay unknown. It could be mono/scarlet fever/allergies… but they will never know for sure and neither will I.
Doctors understand hearing loss better than they did 20 years ago but a good portion of it remains a mystery. Even fourteen years ago my family doctor thought auto-immune hearing disorder was a bunch of “bull” but I hope he knows otherwise now. Wouldn’t it be nice for doctors to get more in depth with us so we aren’t left wondering why so much? I might feel a little better about my money spent or long waits if that was the case.
What are your doctor stories? Anyone have a good doctor to share?
0 thoughts on “Hearing Loss Cause Unknown”
Excellent md-dennis poe at mass eye &ear
Good article, Chelle! I didn’t get Hearing aids until I was 61 years old for a mild/moderate loss (which has progressed), I had rheumatic fever when I was 24 (same cause as scarlet fever) and mono when I was 34 (married and had one child). I’ve had terrible seasonal allergies since I was in my teens. I’ve been told that high blood pressure can also contribute to a hearing loss (I think any high BP I have is either stress-related or because I’m some overweight), though for most of my life, my BP ran low. I am also legally blind – detached retinas – and the best doctors here don’t know what caused that either though I do have some good ideas. I try to just roll with it – and glad I have hearing aids and usable sight. I also have quit going to doctors – largely for the same reason – time, their guesses, and so often the side effects are worse than when the meds are for. I’ll take my chances.
I went to so many ENTs since the two years of ear infections I had 15 years ago. The majority of them told me it was all in my head and a couple just gave me that “we’ll humor you” attitude. Mostly because when they put me in a soundproof room I hear almost perfectly. That’s not where my problem was. Last year I lost even more hearing and got a new hearing test..they felt it wasn’t significant. I did because now even one on one I have a hard time hearing! About 3 months ago I lost the hearing in my right ear entirely. I haven’t bothered to go to a doctor about it. It’s a huge waste of money and time.
SWC did the same for me. I don’t care why. Obviously I’m going deaf. Forget the doctors.Like you (and not just because of the hearing loss) I have lost respect for them. I get more and better help from my grandma.
Thanks Netagene. We have had similar paths only you were a bit later in starting than me. I guess I got it over with early. I haven’t been to a real doctor in years (knock on wood). I’ve had a few push prescriptions I didn’t need, I swear they must get a kick back on it or something. Just seeing the side effects covering a whole magazine page is scary to me.
Gotta roll with it. It’s always something so might as well make the best of it. I have met some awesome people who also have hearing loss…including you! Good to meet you last summer.
That’s just sad. Doctors are supposed to care, not humor. It’s frightening how bad the medical profession has become. Too many of them have a listening problem which is worse than a hearing loss.
The need to know the cause of your hearing loss is a valid need, though early in my hearing loss experience most doctors made it seem like my wanting to know was not important. In my early 20s I finally came a cross a military doctor that wasn’t satisfied that my loss was “hereditary” (I had a grandmother that was deaf from an early age and she had an aunt and uncle who were called “deaf and dumb”.) and wanted to investigate further. Unfortunately, I couldn’t have X-rays and other tests because I was pregnant, and then I moved to California only to have my new doctors see no need to investigate due to my family history… that was good enough for them. It’s never been about what’s good enough for me.
My need to know was always fueled by wanting to do as much as possible to prevent more hearing loss, and I figured if there was a reason that was identifiable that would be a help towards preserving what hearing I had left.
Well, here I am over 45 years past my initial diagnosis (I probably started losing my hearing well before then) and I’d still like to know. I did find a new ENT several years ago when I moved to a different state and he brought up the subject and wanted to know if anyone had investigated the cause of my hearing loss. I told him what all of the other doctors said and he thought I should look into genetic testing for confirmation, but my insurance wouldn’t pay for it, so that was the end of that.
At this point, the reason probably isn’t a big deal, as I have very little hearing left. I do hope someone has a good doctor story to share. Like Chelle, when it comes to my hearing loss, I’ve been disappointed by more doctors than I care to mention… I’ll spare you those stories. ~~Michele
I had an insurance company tell me, and this is a direct quote, “It isn’t necessary to hear.” Not necessary??? It’s necessary for that very person to be on the phone and hear what’s being said so what do they mean not necessary? Sometimes I’d like to make policy makers and doctors deaf for a month so they get it and stop passing it off unnecessary.
You bring up a valid point about wanting to know the cause, preventing further hearing loss. I never thought of that myself, I just had a burning need to know why. Halting the hearing loss years ago would have kept me more mainstream.
Yeah 70% older people have facing hearing loss problems,but so many hearing aids are available in the market. Anyway your post is good and newsworthy.Thanks.
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