A Cautionary Tale: For Physicians, Dentists and Regulatory Boards
Recently, I saw a patient in my dental sleep clinic referred by his general Dentist. He was originally referred to a Sleep Physician that arranged an in-lab sleep study, establishing a moderate level of sleep apnea (Overall AHI = 19, Lateral AHI = 12). After demonstrating intolerance to CPAP, he visited the Sleep Physician requesting to try an oral appliance, something he read about on the Internet. The Sleep Physician flatly refused to provide him with a referral and insisted that he wear CPAP.
Unfortunately, this scenario plays out all too often in North America leaving patients to their own devices. Many simply do nothing and remain untreated for many years before revisiting the notion of finding a remedy for their problem. I routinely, see patients in this situation, sometimes left untreated for up to 5 years. That wasn’t the case here. This patient went back to the Internet and when he read that the American Academy of Sleep Medicine (AASM) recommends Oral Appliances for Mild to Moderate sleep apnea, he started researching online where he could find one.
One of the appliances he read about was the SnoreGuard. He didn’t have to look far to find one. In Canada, the SnoreGuard is sold over-the-counter and he simply picked one up at a local Shoppers Drug Mart. Of course, he was encouraged when the box it came in read “Approved for Mild to Moderate Sleep Apnea”. He purchased his SnoreGuard for $50 Cdn, and over the following two years purchased 7 more for a grand total of $400 Cdn. As far as effectiveness went, it reduced but did not eliminate his snoring and was completely ineffective in supine position. Of course, he had no way of knowing if it was having any impact at all on his Sleep Apnea. Near the end of this period, he noticed that his lower anterior teeth had moved, that he was experiencing increasing pain in these same teeth and that his overall bite had changed. So, he returned to the Internet looking for alternative appliances and found the MyTap.
Before we move to the present and his MyTap experience, I want to discuss what else occurred during the two-year time frame that he wore the ApneaGuard. About half way through that time period, he researched online for an appliance that may better manage his snoring while sleeping supine, and discovered the SnoreRx (snorerx.com: $100 US). He ordered and fitted it himself, using the included directions. However, after one week of wear he went back to the ApneaGuard as the TMJ discomfort that he was experiencing made wearing the SnoreRx unbearable.
During those two years, he attempted to get into the care of a professional to help him. He found two Dentists that advertised that they made oral appliances to manage Sleep Apnea. The first Dentist recommended that he needed over $3000 worth of dental work before making the 3D printed nylon appliance he was being shown, (I have examined his teeth and the term “a bit over the top” is an understatement). The second Dentist conducted a full exam, radiographs etc. ($450 Cdn) and then advised him that the only way he could make him an appliance was if he agreed to a Home Sleep Test at the cost of $400 Cdn out of pocket (his in-lab sleep study was one year old at that time). Understandably, this patient walked out of both of those offices without an appliance. By the way, at no time was the patient asked to produce a Physician’s prescription for an oral appliance. In all fairness, that request may have come further along in the process, but that remains questionable.
Now, back to MyTap and the present. Disillusioned by all of the above, this patient once again resorted to his online efforts to find a solution and came across the MyTap. He called to order a MyTap appliance ($200 Cdn) from a local CPAP store that he found online. He was told “We sell a lot of them and we are all sold out presently, but we will get more later in the week. Why don’t you come in and we’ll fit it for you then”. So, the patient went in. Although the individual that fitted the appliance was very pleasant she did not appear to be very experienced. However, together, they finally got the MyTap fitted comfortably. He was provided some written and verbal instructions on both the MyTap and the AM positioner, and was sent home. Never to be seen again, unless he needed a new MyTap. Literally, one stop therapy!
I inquired if anyone checked his teeth, or his TMJ, or looked in his mouth, at the CPAP store, the answer was no. When I enquired if it was a Dentist or perhaps a Denture Therapist, the answer was no. I can only assume that in between dispensing CPAP machines this individual is literally throwing in oral appliances for anyone that has $200 and will open their mouth!
So there he was, on his own with the most comfortable appliance to-date, but not quite sure what to look for to determine if it was working or how far forward he should adjust it, etc. This is when he asked his general Dentist for advice and was subsequently referred to our clinic. We follow protocols recommended by the American Academy of Dental Sleep Medicine (AADSM). So, we asked this patient to provide recent radiographs from his Dentist, a copy of his original sleep study and a prescription for an oral appliance to manage sleep apnea written by his Physician. He agreed to a full consultation and oral examination including TMJ evaluation and periodontal/dental charting. I checked to see if the MyTap was fitted properly and I advised him on how to adjust it and what to watch for. In addition he was given my email so that he could contact me with questions or issues. We also discussed the tooth movement that had taken place with the SnoreGuard. He was so impressed with the time I took and the thoroughness that was exhibited that he advised me that he will have a proper custom appliance made once this trial MyTap appliance proves this approach will work for him. In an email exchange with me he wrote, “I’d also like to tell you that it was a pleasure finally meeting someone who is so passionate, astute and open minded about what you do while putting the patients needs squarely first. I finally feel like I am in good hands for treating my apnea”. Note to all Physicians and Dentists, patients can tell when you sincerely care about them!
This is a sad state of affairs; when patients can obtain and treat themselves for a life threatening disease with such ease, even having a so-called professional in a medical facility that dispenses CPAP throw an appliance in like it is a pair of earrings. Maybe, someone should just open a Kiosk at the local Mall and sell Oral Appliances and fit them on the spot. Just train an 18 year old how to heat them up and put them in the mouth, pay them minimum wage and I bet there’s money to be made!
This gentleman’s story helps to exemplify much of what is wrong with how Sleep Medicine is currently practiced. Unfortunately, everyone has failed this gentleman, leaving him to his own devices. Thankfully, he pursued relentlessly his desire to mange his Sleep Apnea and I am confident that we will be able to help him manage it adequately. Clearly, there are many “cautions” that result from this gentleman’s experience.
- Ignoring a patient’s preference for an alternative treatment that is literature validated and supported by the current guidelines is WRONG
- A Primary Care Physician not following up and providing assistance in finding alternative therapy in cases of CPAP intolerance is WRONG
- Providing appliances without performing a proper evaluation and arranging for proper follow-up is WRONG
- Insisting that a patient have a Home Sleep Test that he will have to pay for out of pocket when he has a recent in-lab Sleep Study is WRONG
- Prioritizing elective high-end dental treatment over the management of sleep apnea is WRONG
- Making management of life threatening diseases available over the counter is WRONG
- This type of blatant disregard for a patient’s best interest is WRONG
The New Guidelines jointly published by the AASM and AADSM are meant to provide clinician’s guidance based on the most current literature, to blatantly ignore them is WRONG. Unfortunately, this scenario plays out daily in every city of every region throughout North America, and that’s simply WRONG. Abandoned by Medical Professionals, this patient was left to his own devices to manage his problem without their aide and when he attempted to seek help from Dental Professionals engaged in this area of practice, we also let him down, and that’s simply WRONG.
Consider this a Cautionary Tale for Physicians, Dentists and Regulatory Boards.