Patient Stories - Neil's Story

A Long Time Snorer Finds Relief and a Good Night's Sleep!

My Snoring Was a Problem

For thirty years family, friends, and roommates told me that I had a snoring problem. As far back as I can remember I was told I snored, so later when roommates informed me that I was rattling the walls, I shrugged it off and figured they were being overly sensitive. Not until I got married and my wife made the same observation to me did I begin to take notice.

She not only mentioned the snoring, but she informed me of something no one else had told me before -- I would actually stop breathing, repeatedly, throughout the night. She described a cycle of stopped breathing, choking and gasping for air, and tossing and turning that repeated throughout the night. One night she even recorded me on a tape recorder to prove to me how bad it was.

Upon hearing the tape, I had to admit that I was a noisy sleeper. The only solution that came to mind was to have my adenoids removed. This was suggested by my grandfather years before. My sister had hers removed when she had her tonsillectomy and she never snored again. Now if I could only persuade my doctor to remove my tonsils and adenoids.

The Daily Struggle

During this time I had an office job with a large, well-known computer software company in Provo, Utah. I was living in Salt Lake City and commuted forty-five miles each way. Getting to work was usually not a problem. But getting home was an entirely different story. I was falling asleep behind the wheel, only catching myself as the car would swerve into the next lane or toward the median. It was a huge struggle every day to keep my eyes (and the car) on the road as I drove home from work.

While at work I fought off fatigue by eating sunflower seeds. Keeping my mouth busy while I stared at my computer helped alleviate my sleepiness. This worked fairly well while at my desk, but I couldn't chomp sunflower seeds during meetings. Inevitably I would nod off. Obviously this was not the best way to impress management and peers.

At the end of the day, I would arrive home and sit in front of the TV. Within minutes I would be asleep, snorting and gasping away.

Learning About Obstructive Sleep Apnea

Before I got the chance to move forward with my tonsillectomy plans, my wife came upon an article in a magazine that discussed a sleep disorder that neither of us had ever heard of before called Obstructive Sleep Apnea (OSA). The symptoms described exactly those that I was experiencing. The article offered several different ways to treat OSA, including continuous positive airway pressure (CPAP) and surgery. This was a national magazine, and it just so happened that the doctor featured in the article worked at the sleep center at LDS Hospital in Salt Lake City, just a few minutes away from our apartment.

I wasted little time setting up an appointment with him. I first had to fill out a questionnaire, then my wife and I met with the doctor. After that initial consultation, we set up an appointment for me to spend a night or two in the sleep lab. I was on my way to being treated! Then the problems began.

Insurance Coverage is a Problem

Before staying overnight in the lab, I called my insurance company to verify that the overnight stay and subsequent treatments would be covered. I was told that they would not be covered. It seems back in 1993 sleep disorders were not considered a medical condition worthy of insurance coverage. Sleep disorders were viewed as a sort of an optional thing, like plastic surgery, liposuction, stomach stapling, etc. Nice but not necessary. The thing that infuriated me was that sleep disorders were not covered by my company health plan, but acupuncture was.

The insurance company told me that they simply administer the insurance plan, but it was up to my employer what exactly would or would not be covered. They suggested I talk to my employer. My employer (the large, well-known computer software company in Provo) said I could plead my case to an appeals committee.

I spent a lot of time thumbing through medical journals at the University of Utah medical library, gathering together whatever information I could find on OSA. I put together a nice packet of information, thoroughly explaining what OSA was, the heath risks, and the treatment involved. I also included a letter from the doctor, who further explained the seriousness of OSA, giving his recommendation for further evaluation of my condition.

I hoped to meet with the appeals committee in person to discuss OSA, and the possibility of them adding it to the heath plan, or at least making an exception in my case and allowing me to continue with the sleep study. I was not permitted to meet with the committee, so their decision was based solely on the information packet I submitted to them. A few weeks later I was informed that my appeal had been denied. I don't know who was on the committee, or how many people were on it. I suspect it was made up of only two or three company employees who felt they had better things to do than read about sleep disorders. I am certain that the rejection was based on a combination of ignorance and laziness. Why go through the trouble of making an exception for this one employee when it would be easier just to reject the appeal? Besides, rejecting it would save the company a few thousand dollars.

By this point I was frustrated with the whole thing. I couldn't afford to pay for the sleep study myself, nor would I be able to afford the treatment after the study. I ended up having to pay the initial $200 consultation fee with the doctor out of my own pocket, and had nothing to show for it. I threw away all of the paperwork I had collected on OSA and tried to leave the matter behind me.

Second Attempt at Treatment

Two years later, my wife convinced me to discuss it with my family doctor. Perhaps he could arrange for the removal of my tonsils and adenoids (now I was back to my original plan!). I told him I believed I suffered from OSA, and that the tonsillectomy might help me. Besides, I was constantly having problems with my tonsils anyway, so we could kill two birds with one stone. I knew my insurance plan would cover the tonsillectomy if ordered by a doctor.

He arranged for a mini sleep study at our local hospital. I went in about lunchtime, and they connected me up with wires and had me nap for only a couple of hours. Halfway through, after a lot of tossing and turning, they hooked me up on a CPAP. I went right to sleep after that. The conditions weren't the best for a proper sleep study, but at least the doctor could get some data to support my claim regarding my OSA. Though I felt I hadn't really slept well enough for them to collect good data, the technician disagreed and said she had collected some really great data. And because the mini sleep study wasn't done for sleep disorder purposes, the insurance company paid for it! (Yes, I was still with the large, well-known computer software company in Provo, Utah).

I explained to the surgeon that would be removing my tonsils that one of the purposes of the tonsillectomy was to hopefully remove some of the obstruction in my air passageway. In our discussions before the surgery we agreed that he would also remove my uvula, since I had been having problems with it too. The insurance company wouldn't pay for that (since it dealt with sleep disorders), but he said he would cut it off when moving from one tonsil to the other. The surgery was done, and after two weeks of complete hell, I recovered well enough to go back to work. I now don't get sore throats anymore (thanks to the tonsillectomy), but it didn't take care of the OSA!

Let's Try This One More Time!

Four more years passed and I'm still with the same software company. After talking with an acquaintance upstairs, I discovered that he had suffered from OSA and had done a sleep study several months back, leading to surgery on his soft palate, tongue, and uvula. He had gone through intense discomfort recovering from the surgery (as I did), but since then he was able to breathe at night and come to work well rested. He now had the energy to walk a treadmill at home while watching TV and had already lost 80 pounds! A huge success story.

It was during my discussions with him that I became aware that our company had now included sleep disorders as part of its health plan! This was six years after my appeal was rejected. Though I'll probably never know, I hope that I had something to do with the eventual change in the company's health coverage. I was still licking my wounds from my experience with the appeals committee, but talking to this co-worker gave me renewed hope and interest in combating my OSA for good.

I arranged an appointment with a sleep doctor in Provo. A week and a half later I had an overnight sleep study done (only one night was needed because my readings were so good!) and three days later I had a CPAP machine in my home.

Success At Last!

My wife was absolutely amazed when she saw me sleeping soundly. No gasps for air, no choking, no moving around. I just lie there, breathing evenly and sleeping soundly. I was fortunate enough to adapt to the mask immediately. I know some people have panic attacks and really have a hard time with it. All I can say is don't give up! The CPAP works.

The change for me was immediate. I found myself alert all day at work, and alert while driving home. I didn't have incredible bursts of energy or anything like that. But I need much less sleep (I often get by on five hours now). Sometimes after a hard day I still fall asleep in front of the TV as anyone does. But it's not a nightly event like it used to be.

My daughter, who was five at the time, didn't like the CPAP. She had spent every night of her life hearing her daddy's snores coming from down the hall. It upset her the first few nights because she could not hear me! She quickly got over her concerns.

I have now had my CPAP for two years. A night doesn't go by without me using it.

I now recently converted my dad to CPAP usage. He fell asleep at the wheel on a freeway near Disneyland. Several cars were totaled, fortunately no one was hurt. That was in 1995. Five years later and after much persuasion I was able to get him to go to a sleep center. He's been on his CPAP for about six months now. The roads are now safer in LA and he feels much better too.

Thanks to all who make these wonderful machines and the technicians and doctors that get us hooked up to them!

To contact Neil, email info@talkaboutsleep.com

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