Editor’s Note: Following an episode of CBS’ show, Rules of Engagement, many people were offended by a suggestion in the show that snoring, and more likely, apnea, could be treated by a surgical procedure known as uvulopalatopharyngoplasty. This personal story is a positive result of the public’s resentment of the suggestion.
By Capistrano
I’m a 57-year-old woman from the Washington, D.C. metro area who underwent uvulopalatopharyngoplasty (UPPP) surgery in July, 2005, because I was told it would treat my severe obstructive sleep apnea.
Basically, this procedure removes soft tissue in the back of the throat. Such tissue includes all or part of the uvula (the soft flap of tissue hanging down at the back of the mouth), and parts of the soft palate and the throat tissue behind it.
After researching the procedure on the Internet, I learned that there are potentially serious complications, including:
- Infection
- Impaired function in the soft palate and throat muscles
- Mucus in the throat
- Changes in voice frequency
- Swallowing problems
- Regurgitation of fluids through the nose or mouth
- Failure or recurrence of apnea
I discussed these complications with my ear, nose and throat (ENT) specialist. He said that if any of these problems did occur, they would not be permanent. The informational sheet he provided said that healing would take two to three weeks.
I scheduled surgery for July 2005. My story, however, begins 14 years earlier, in 1991.
I saw my cardiologist for a check up because I have a leaky valve. I told him I experienced frequent tiredness and expected him to say it was related to my valve problem. Instead, he recommended that I get tested for sleep apnea, which I did. I had my first sleep study at a local northern Virginia hospital.
The results read:
“Moderate to severe snoring and significant sleep disordered breathing with recurrent arousals and sleep fragmentation. Overall Respiratory Disturbance Index (RDI) was 13.0 events per hour of sleep consistent with mild obstructive sleep apnea/hypopnea. There was significant oxygen desaturation associated with sleep disordered breathing, reaching an average 92 percent oxygen saturation and a low of 83 percent oxygen saturation.”
Though sleep specialists prefer treatment with a continuous positive airway pressure (CPAP) machine for sleep apnea, I had a strong feeling I wouldn’t do well with the CPAP. Something about the mask sitting on my nose, extending from the machine by a six-foot length of tubing which delivers the air, caused me severe claustrophobia. I was eager to avoid it at any cost. Therefore, when I discussed the results with my ENT, we agreed that the best course would be for me to lose weight and try sleeping on my side.
However, over the next few years my apnea progressed. No matter how much sleep I got, I was exhausted.
I worked full time and commuted two hours to work — a commute I faced again at the end of the day when I was even more tired. Also, I cared for a husband and two adolescent daughters, as well as several pets.
On weekends, I went from one nap to another, but never felt rested. I always woke tired. Not remembering my dreams bothered me. I snored, which sounded loud and obnoxious family members told me. I couldn’t watch TV or movies after 9 p.m. because I fell asleep, and snored, on the couch. Obviously, my quality of life suffered.
In 2005, when I underwent yet another sleep study, I walked away with a prescription in my hand for a CPAP machine.
To overcome my fear of the dreaded machine, I visited a support group for CPAP users. The folks there supported me and encouraged me to give the machine a chance, but as soon as the mask was placed over my nose during the study, I experienced acute claustrophobia and anxiety.
A few months later, even more fatigued, I resolved to get through a full sleep study with CPAP. I convinced myself I would be brave.
I used the CPAP for around three hours, which was enough time for the sleep tech to obtain information about my apnea, but, more importantly, how I responded to the various air pressures on the CPAP machine that were tried while I slept.
Unfortunately, one frightening thing we learned during this sleep study was that my RDI had increased to 23.1.
Even though I made it through the sleep study, I knew a CPAP would never be for me, and it was at this point that I first considered the UPPP surgery.
Before making a final decision, I consulted with three of my other doctors. Did they suggest I have the UPPP since the CPAP was no longer an option? My cardiologist favored this option. Because I have a history of arrhythmias and a leaky valve, he felt that the sleep apnea, untreated, would put me at risk. My internist and a pulmonologist also concurred that my apnea had to be treated, one way or another.
So, what do you do when four doctors tell you that you have a potentially dangerous condition, and you can’t tolerate the gold standard treatment? I decided to have the surgery, despite persistent misgivings and against my better judgement. For some reason (perhaps intuition and that long list of side effects), I didn’t have a good feeling about this UPPP.
The surgery itself and the two-day hospital stay were okay, if a bit hazy. I guess the morphine, which was quite effective at pain control, caused the haze.
My problems began when I returned home. I felt that there was a foreign body in the back of my throat, and I gagged and coughed a lot despite being on a soft/semi-soft diet. Thank God for chocolate nutritional drinks or I never would have gotten through.
When I went back to the ENT a few days later, he discovered that one of the stitches remained in my throat. But even after he removed it, the severe discomfort in my throat continued. I had never coughed so much in my life.
Finally, feeling totally miserable a week after surgery, I visited the emergency room where, to my surprise, doctors diagnosed me with inhalation pneumonia. No one had told me that it is imperative after UPPP to eat sitting up, so I had inhaled food which led to my new diagnosis.
I then spent two more days in the hospital on intravenous antibiotics and respiration therapy.
Recovering at home, I felt extremely scared and vulnerable. Even watching the evening news upset me. A week later, I had my first full-blown panic attack which sent me to the ER again.
For the past two and a half years, I have experienced other health issues which may or may not be related to the UPPP.
About two months after the surgery, I still had problems swallowing. The ENT said, “Your esophagus is red,” and that was my introduction to the world of acid reflux. An endoscopy revealed that I had gastritis and a hiatal hernia.
A few months later I developed an upper sinus infection, so I was placed on more antibiotics. The nasal congestion I experience because of a deviated septum worsened. Lastly, I realized that the anatomy of my throat is now permanently altered. It’s now harder for me to swallow. I also contend with chronic nasal and throat congestion, nosebleeds, and sensitivities to certain foods and spices that I never had before. Are these related? I can’t say with 100 percent certainty, but these issues have cropped up only since undergoing the UPPP procedure.
As to the UPPP surgery, my fatigue and snoring are much better, and I’m happy that my vivid dreams returned. Is the apnea gone or much improved? I am not sure since I haven’t gone back for a follow-up sleep study.
I believe the apnea is a lot better, but I know that statistically there is a good chance it will return. The UPPP only has about a 45-to-50 percent success rate, depending on the severity of apnea. “Success” is also perceptual. Most patients need “touch-ups” or additional surgeries in the future to remove scar tissue that grows in the back of the throat.
I do believe that the UPPP has aggravated underlying conditions, such as my nasal congestion and reflux. I am only now getting back on my feet after two-and-a-half years of cascading medical problems.
My conclusion is that the uvula is not a useless organ. Perhaps it has an important function in the drainage system between the nose, sinuses and throat.
Scientists have just discovered that the appendix, thought to be another useless organ, plays a part in keeping a healthy bacterial balance in the digestive tract.
I believe that as time goes on, we will learn more about the importance of the uvula and the after-effects of removing it.
Despite the improvement in my apnea, I deeply regret that I had the surgery.
When I asked my doctor after the surgery if the throat discomfort would go away, he replied, “It will get better or you will get used to it.” I wish he had told me that before the UPPP.
To anyone considering this procedure, I would say this: The side effects are major and may be permanent. Underlying sinus, nasal or reflux problems may worsen. Adjust to the CPAP machine if you can do so.
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Editor’s Note: At the request of the author, additional details were added into the 29th paragraph after it was published. The full section of change is: “It’s now harder for me to swallow. I also contend with chronic nasal and throat congestion, nosebleeds, and sensitivities to certain foods and spices that I never had before. Are these related? I can’t say with 100 percent certainty, but these issues have cropped up only since undergoing the UPPP procedure.”
_________________________
Capistrano is a 57-year-old woman living just outside Washington, D.C., and is one of many people who have undergone the uvulopalatopharyngoplasty (UPPP) procedure for treatment of sleep apnea, only later to regret the decision. Capistrano may be reached at Capistrano.
Technorati Tags: apnea, AutoPAP, bi-level device, BiPAP, cardiologists, CBS, claustrophobia, CPAP, ENT, fatigued, obstructive sleep apnea, Rules of Engagement, sleep apnea, sleep studies, sleep tech, soft palate, soft tissue in throat, TV shows, UP3, UPPP, uvula, uvulopalatopharyngoplasty, Washington DC, xPAP
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{ 2 comments… read them below or add one }
care to take a look at the flip side? didnt think so. gotta love sensationalism and all thats good for ratings and hatred against doctors who try to help. NO ONE IS THE EXACT SAME OR WILL HAVE THE EXACT SAME OUTCOME. many many many studies which even you have validated prove that people make the biggest scene when something doesnt go thier way. where are all the people who DID have successful UPPP’s? you cant tell me they arent out there. you said yourself theres a 40-50% success rate. thats good enuf for me. if i dont try to do anything what has that netted me? NOTHING. im going to go vomit now.
Yes, there are many of us who support the “flip side”.
After years of snoring, apnea, and constant struggling with uvula inflammation, I opted for UPPP 8 years ago. In my particular case, my uvula would swell (especially during allergy season) to the point where I would awaken at night actually choking on it.
Sure, the surgery was tough, and the recovery was painful for the first week or 10 days. But it was worth every second of the discomfort. It’s great to be able to function without constantly clearing my throat due to an enlarged uvula and soft palate.
Interesingly enough however, is the fact that I resumed snoring a year later. The one thing that everyone needs to consider is that the uvula and soft palate are not the only considerations in the airway obstruction that causes apnea. Tongue size and position (among other issues) can also be contrubuting factors.
In my case, I wear a dental appliance at night to reposition my jaw and tongue forward to open the airway. This, combined with the UPPP, alleviate my symptoms.
So — I’d do it again in a heartbeat.
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