Three Survivors of Cancer Discuss Their Struggles With Tinnitus and Hyperacusis, two Conditions They Consider Far Worse

 

Three Survivors of Cancer Discuss Their Struggles With Tinnitus and Hyperacusis, two Conditions They Consider Far Worse

Written by J. D. Rider 

David Vance, Susan Caswell, and Kathy McCain fought the dreaded condition cancer in various forms. It's the diagnosis a person hopes to never get. But even so, they testify that cancer was easy compared to tinnitus and hyperacusis, an aural-twisted duo whose savage decrees equate to endless traps and prison life. Who took their lives and everything and blew them all to smithereens.

To preface this article, these are THEIR stories. THEIR thoughts. They're talking from experience. And not to stink on cancer, but in THEIR situations, tinnitus and hyperacusis have been far, far worse. Cancer was scary, horrible. We all know it is. It takes lives, squashes hope. But so do these aggressors, as suicides are a frequent climax to tinnitus and hyperacusis. 

As we cover their impact on each individual, they'll explain why these ear traps are life-ending conditions long before the sufferers inhale final breaths. Why isolation crushes them, avoiding endless noises. Why life evaporated, despite the fact they're breathing still. Hiding in a room for decades doesn't sound like living, does it? Well now they're like a flicker of light and memories, casting their shadows on a distant, morbid wall, never seen again--their light has mostly faded out, and memories are mournings. But that's what hiding does. They've become allergic to sound and don't have a choice. And as you hear their stories they'll explain that further.

They contrast their lives with cancer to tinnitus and hyperacusis to educate humanity, because people know that cancer is an awful thing, but they often have trouble understanding why these ear conditions would be. Immense trouble, really, and often it fosters intense invalidation, or major apathy. It makes David, Susan, Kathy yearn for understanding. Yearn for true acceptance. So by sharing THEIR STORIES, citing how the rightly respected cancer was surprisingly easier, they hope to drive the point that tinnitus and hyperacusis are indeed vile monsters. They just want a fair shake. (Doesn't everyone?)

David, Susan, Kathy, along with hordes of others who suffer at the hands of tinnitus and hyperacusis, have all been belittled or shooed away by folks they hoped would understand. They didn't. Well they're hoping their tragic stories change some people's points-of-view, if only by serving to foster seeds for future understanding. Hopefully they grow. Tinnitus and hyperacusis desperately need treatments and someday that Holy Grail cure. With these awful ear conditions people need to know their gravity for torture. That's their real goal.

So to share David's story, he went from working as a musician, in fine-dining hospitality, to living life abundantly, to hiding in his room 24/7. His tinnitus is what's commonly called "reactive tinnitus." That means in the presence of sound the tinnitus worsens, even to normal, everyday sounds. It's like he has a beehive on steroids stuck in his ears. So many tones whirling. Some might say, "Well, that's a nuisance, right? Just push through. Conquer it." Well, here's the thing: you can't, because the thing about it is, is that when exposing to these normal, simple sounds it worsens the condition. Permanently too, for people such as David, even if he's wearing ear protection, like heavy-duty earmuffs or foam earplugs. The highest grade stuff.

And not to mention the pain hyperacusis, his other ear concomitant. With almost every sound he feels burning and knife-like cuts to his inner ears. No exaggeration. And again, exposing worsens the condition. He needs quiet or he's screwed, to put it mildly, but it's a loud, loud world. There really isn't quiet.

So what does this mean, then? Well if you think about our lives, what is life imbedded in? Sound. It's lots of things, yes, but all those things are sound. Talking. Cooking. Hygiene. Driving down a roadway. Everything we do. Noise is the world. Noise is the party. Noise is existence. So the person in this situation has to hide from sound. Has to hide from life, so everything is gone.

David is thankful to God that he can still talk to some degree. With these conditions many people can't. But despite that, the list of things he can't do stretches from here to the moon's surface. He thinks about his journey with lymphoma and knows how bad it was. Cancer was truly awful. "But if that's a raging nuisance, then what I got now is inhumane entirely," David testified. "This is just the worst thing. I made a list, in fact, citing the things with cancer that were much easier to do before having tinnitus and hyperacusis.

1. I was able to go to social functions with no problems.

2. Had amazing relationships with everyone around me. Now some of my closest family members and I barely talk anymore, and with some of them, we don't talk at all, because of having breakdowns; I expressed the dire situation and got distressed. My symptoms are so severe, and it's not my fault, you know?

3. With cancer I could make my own phone calls with no issues.

4. Could take a shower/bath without worrying about the running water causing me a setback and pain.

5. Had a lot more support, empathy, and compassion from everyone around me. A friend even threw a fundraising club event to help out. I performed on stage, rapping my heart out. With these ear conditions I could never do those things. Not even close.

6. With lymphoma I could go to the coffee shop, get a hot beverage, walk down the street with my headphones on, listening to the music that I enjoy while going to work. This is what I loved the most out of my day.

7. I was still able to work a physical job. So after my treatments for a short while, until the auditory symptoms kicked in (three months later), I continued working for another nine months in the quietest part of the restaurant at the host stand, until I could not handle it anymore. I pushed through the pain and it was the worst thing I did.

8. With cancer I was 90% fully independent. Today I can barely even make it to the grocery store, a five minute walk away, without being in suicidal pain from noise.

9. With cancer I had a laid-out plan of my life still, with hope in the driver's seat. My oncologist told me I had an 80% chance of living healthy still. My plan was to travel the world working in different fine-dining hospitality establishments, meeting my soulmate along the way, traveling together, working together maybe. Buying a house together, then starting our own family. But everything is smashed now, because I have these ear conditions which at the present time are incurable.

10. Back then I could easily look for a new residence on my own. Now I can barely travel to make it happen.

11. Three months into hyperacusis I attempted suicide. I never did with cancer, and it never crossed my mind to.

It's just unbelievable how these ear conditions have destroyed my life, and it's something the world needs to know. That ears can really do this."

Another person who's in similar shoes to David is Susan Caswell. And God bless Susan--she's a real fighter. One of the strongest souls around. She's condemned to a bed with raging tinnitus, reacting to every single sound that enters her existence; they come like uninvited pests, spiking her cacophonous ringing to exceed its baseline level, which blares as loud as fire trucks, she wrote with streaming tears. There are seven different noises that occupy her tinnitus. It sounds like a faulty jet that's wheezing with an engine ready to explode--something very wrong. Something torturous.

If she tries to take in noises it worsens her condition, and that's because she also has hyperacusis. So everything is 50 times louder in perception basically, causing major discomfort. She hasn't even been able to bathe or brush her teeth in six years! That's how bad she's suffering. She tried and it worsened her. Can you imagine that? Never bathing or brushing? That's inhumane and ghastly.

Years ago she had suffered cancer's wrath, defeating it for good. Ovarian, the cancer. But she says her current battles with tinnitus and hyperacusis are "100 times harder," and that her cancer restrictions had paled by comparison.

"When I dealt with cancer I was still living life almost normal," Susan said. "I was still doing stuff. Still a person sociable. It didn't take my dignity like these conditions do." 

Now she's hiding in a room 24/7. She lost her job, boarding dogs. Her hobbies, entertainment, like dancing, hiking, eating out, and even eating at her house.

"I can barely eat at all. Eating causes me tinnitus spikes and worse hyperacusis. My diet is almost like a liquid diet. I only eat soft, mushy stuff, which breaks my heart because I used to love food."

She can barely see her partner named Malcom, either. They've been together for over 40 years, but now she sees him sparingly, bonding very little, and never talking anymore.

"This breaks Malcolm's heart so much. He has mild, stable tinnitus, so he has trouble understanding the concept of reactive tinnitus, which is the opposite of stable. His doesn't worsen to sounds like I do, and that makes all the difference in the world. If every sound makes it worse, (and permanently worse) how in the world would a person think they can coexist with that and carry on with life, when sound is in everything we do? You can't. You have to hide from all of it, which means your life's a goner."

But that is the heart of hyperacusis. That is what it is: the loneliest condition; hiding, losing everything.

And Kathy McCain, another person's life upended by these stranglers, knows that isolation. She also battled cancer.

"Cancer was a piece of cake compared to my continued day to day life for 12 years dealing with loudness hyperacusis, multi-signal tinnitus, reactive tinnitus, autophony, and pulsatile tinnitus. At times I still get stinging in my left ear. Currently the hissing electronic tinnitus sound reacts to my own voice as well.

This all started in 2012. I hurt my back bending over to pick up a magazine off the floor. I went to a specialist, but the doctor scared me to death about my condition, and wanted to put hardware in my back. He wanted to have a CT scan with contrast and the dye would be injected into my spine. This seemed very risky and there were many possible complications from that procedure.

He then recommended an MRI with contrast instead. I had done MRIs before and even though this was going to be an enclosed MRI, so I chose that option.

In the MRI machine (a Siemens T3), the test was extremely loud even though I had double hearing protection on. Silicon earplugs and small earmuffs supplied by the hospital. This was the same hearing protection I had used for previous open MRIs

My hyperacusis, tinnitus, and autophony started after that test and has never let up! I had extreme burning pain afterwards in my ear, jaw, and neck all on my left side. This eventually went away.

Fast forward to 2022. After dealing with trying to manage my life for over 10 years with tinnitus and hyperacusis, I went for my annual mammogram, and as usual I had to wear foam earplugs and muffs during the test. This mammo revealed suspicious areas. A biopsy was performed, and I had to wear hearing protection during that procedure. (I have to wear hearing protection for all tests since the sound injury.) DCIS was diagnosed--the cancer.

A lumpectomy was performed. Hearing protection was used during the operation, of course. Next, I had 30 radiation treatments. I was more concerned about the ear conditions getting worse than the cancer coming back. I wore double hearing protection during the treatments.

I had a 3D mammogram after radiation treatments and it revealed I was cancer free. Once again I was more concerned about the machine increasing my tinnitus and loudness hyperacusis than what the mammogram might find. I wore double hearing protection during the test.

As I said cancer was a piece of cake compared to these nightmarish ear conditions. My hearing perception is like wearing hearing aids turned up on high volume but you cannot turn them down or remove them. A lady friend of mine wore hearing aids and could understand my plight. Frequencies that I never noticed before are loud. It’s like everything has a microphone on it which is connected to a Marshall amplifier, even people’s voices.

I am sitting on the sideline in a quiet house watching the world go by. I missed my son’s wedding and now I will miss the upcoming birth of my first grandchild. How to be a grandmother? This hearing disability sucks all the joy of living out of you! As of this writing, I literally have no life. I have become a prisoner in my house. And anything I must do--like appointments with doctors, for example--requires special planning which makes it a thousand times harder than it used to be. I wear foam earplugs when I go out, which is seldom.

I will have to go thru a heart valve replacement surgery in the near future, which will be more complicated than the first due to the fact I have an enlarged aorta too. I am concerned about the surgery but even more so with these auditory disabilities. This worries me more than the surgery!

I am a fighter. The first surgery went well 17 years ago. No auditory issues.  

With each problem I have had to face in life, there was a way to move forward or resolve each one. WELL NOT THIS ONE."

Kathy's final two sentences sum it up: THERE ARE NO SOLUTIONS. The people who suffer with these ear conditions desperately need a revolution. Please spread this around. Educate humanity. Make a mark for changes.