With another view on the toll hyperacusis takes, Kathy’s husband shares the details of just how devastating this disease is. The perspective of an onlooker — someone witnessing a loved one’s immense struggles with hyperacusis — chronicles a world of survival and extreme adjustments.
Hyper = Excessive
Acusis = Sound Perception
For Kathy, hyperacusis is a condition that turned her life upside down and left her hanging there!
The following is her story:
Let’s go back 27 years . . .
Kathy had an ear infection and a water irrigation was performed to remove impacted wax from her ears. This started a bout of severe tinnitus and mild hyperacusis. She handled this with courage and determination. Somehow, someway, she recovered from that (no TRT, no CBT, just time). She’s tough!
Just how tough, let me count the ways:
- Recovered from Aortic Valve Replacement Surgery
- Recovered from Pericardial Window Surgery
- Recovered from Back Surgery
- Recovered from Gall Bladder Surgery
- Recovered from Colon-Resection Surgery
Our life was moving along pretty well. Kathy still had a little tinnitus every now and then. She avoided movies and live music to help ensure that the tinnitus and hyperacusis wouldn’t return.
One evening, she bent down to grab something and her back locked-up, and she was in horrible pain (almost a year after her spinal surgery). She went to a specialist who scared her half to death; told her she needed plates and screws. He wanted to inject a contrast dye into her spine and perform a CT Scan. We investigated this procedure and found out that you can have some extremely debilitating side effects. The alternative was an MRI with contrast. Kathy had already had open MRIs before without any problems, so we decided to go this route, the difference being this would be an enclosed MRI with contrast (Siemens Espree 2008). The test was about 40 minutes compared to 15-20 for an open MRI.
August 12, 2012 —
Kathy was using silicone ear plugs (same that she wore for the open MRI) and the hospital gave her some small earmuffs, which she also donned. The test took about 40 minutes. The sounds were high-pitched and extremely loud. The pulsing sounds — jack-hammering, etc. — from the MRI scan were horrendous. Kathy kept going with the test, as she was pushing down on the earmuffs to try to protect her ears more. At this point, I should’ve asked to stop the test, but I figured she would’ve stopped it if she felt there were any problems. She told me she just froze and there was no way to contact the technician (BAD MISTAKE). We later found out that the decibel level of that MRI machine can peak at 129 dB (source: Siemens Espree 2008 manual). (Avoid MRIs if possible . . . that is our motto).
Finally, the test was over. We left the hospital; stopped and got some coffee. Kathy, exhausted from the ordeal, laid down for a nap. When she awoke, she realized she was in trouble! She had burning, searing pain coming from her left ear, left jaw, and running down the left side of her neck. Her head was ringing/hissing and every sound seemed louder to her. I remember telling her, “Honey, it will be okay. Don’t worry. This will subside and you will be alright.” But I was completely wrong!
This was the beginning of a nightmare that never ends! As the days wore on and nothing improved, Kathy looked at me and said, “What the hell did that machine do to me?” I looked in her eyes, saw the despair, and figured there must be an answer, a treatment, or solution, and that I would find it!
Note: the burning pain stopped after about a year, but unfortunately all the other symptoms remained.
After a few weeks went by with no improvement, we started searching for answers. This is when we learned of the term “hyperacusis.” This seemed to describe what Kathy was experiencing. Not only was she experiencing extreme hyperacusis, but also multiple-signal tinnitus, reactive tinnitus, and windup tinnitus.
Looking at some of the options:
TRT – Tinnitus Retraining Therapy — She cannot tolerate white noise in her ear, which exacerbates her tinnitus and does absolutely nothing for the hyperacusis, the hearing disorder. She is a Category 4 by TRT description, which is the highest — or worst — rating that a hyperacusis patient can be graded at.
Masking – You cannot mask the type of tinnitus she is describing and when you try, it actually makes the tinnitus worse!
CBT — You cannot talk yourself to a better place when you experience what Kathy does everyday. The torturous symptoms are too profound.
The last 10+ years have pushed her to the edge because, for her, there really is no help! As her spouse, the person who is supposed to protect her, I have felt great sadness from this and the loss of a good life with my wife! There is no path forward and no effective treatment for her condition. She listened to the experts and went out without hearing protection for 2.5 years. That only made the tinnitus worse and did nothing for her hearing. She still hears everything much louder than it actually is, including her own voice, which is called autophony. She is literally housebound and if she must leave, she has to wear foam earplugs.
Going anywhere requires careful planning, thinking, and having to make strategic changes if the environment becomes intolerable for Kathy. As her spouse, I’ve become her caregiver, which means handling many activities that Kathy always handled (going to the grocery store, filling the car up with gas, etc.). This has caused her great distress, depression, and despondency. When she continuously talks about her condition and asks what she’s supposed to do with her life, I have no good answer. And when she looks at me and says, “I wish I was dead,” it affects me, too, in a very negative way, obviously. All of her suffering does! And from a place of great distress, I have lashed out at her before. That was wrong, but it has happened and I truly regret it.
It’s a struggle for me, but I must never forget that she’s the person who’s suffering, she’s the person enveloped in sadness, and she’s the one who has to figure out a way to “OWN IT.”
I could go on and on about Kathy’s disability, and how it has changed our lives forever, but the real problem is this: the failures of the medical community. They’re unable to isolate the cause of hyperacusis and tinnitus in an individual patient. In other words, the day Kathy had that MRI scan, what happened to her auditory system and, more importantly, how can it be restored to normal? This type of thinking should be the laser-focus of research. This is where the funds should be utilized. This is what all the experts should be collaborating about.
Since her auditory system was severely damaged by a medical device (we know there was an acoustic shock and injury), the medical community should be doing everything they can to help Kathy and people like her. In addition, these LOUD MRIs need to be banned. The focus on technology for these machines needs to be MUCH QUIETER and patient-friendly. I mean, think about it, just how loud must a medical test be? This is not acceptable and should not happen to any person from a medical test!