Posted by chele on April 19, 2002 at 18:46:07:

In Reply to: Re: Re: sleep study results--disappointing! posted by Joy on April 18, 2002 at 16:51:48:

(Sorry for the length, but it really seems Joy should be able to get this CPAP so I wanted to give her all the ammo I could.) Joy, the fact that your doctor wrote down "Upper Airways Resistance Syndrome" as a diagnosis gives you something to go on, in terms of fighting with insurance to get CPAP. I don't know if when you say "my doctor", you mean a board-certified sleep specialist, who is dealing with your sleep study results and follow-up, or if it's your "primary care physician" who is just working from the report-back from the sleep lab. The board-certified specialist will be more helpful in getting the insurance company to cooperate.

Now I'll try to help. There's lots of info in past forums, but searching for "UARS" with the site search engine gives hundreds of references and they're hard to sort through. I'm not a doctor or a respiratory technician; what I'm telling you is based on the research I did during an experience of fighting to get CPAP when my diagnosis was "not apnea" and only "maybe" UARS.

Obstructive Sleep Apnea (OSA) was identified in the 1960s and CPAP was invented around 1980. In the 1980s, various numbers were established by doctors as a rule of thumb for how many apneas + hypopneas per hour qualify as OSA. This is often called the AHI, for "apnea-hypopnea index"; another term, RDI, which stands for respiratory disturbance index, is sometimes used. (An apnea event is defined as cessation of airflow for 10 seconds or more and a hypopnea event is a 50% reduction of airflow.) Different levels were defined as mild, moderate and severe. I forget the exact AHI numbers for each level, but for example my level of 26 AHI is considered mild-to-moderate.

Please note this point: Medicare established guidelines on a certain level of AHI that qualifies as OSA. Those guidelines are being or have been changed, but many of the insurance companies still use the old numbers.

In the meantime, in the early 1990s, some leading researchers and practicing doctors in the sleep medicine field identified the Upper Airways Resistance Syndrome (UARS). One of them is named Guillemenault, I believe, if you want to look up the articles in medical journals, which you can do at a site called PubMed. With UARS, that the airway can become narrowed or obstructed not quite enough to qualify as an apnea or a hypopnea, but enough that your breathing becomes labored in the attempt to pull air in, and the effort causes an arousal ("waking up", although it can be just from, say, REM stage to Stage 2 or Stage 1). These events are sometimes called RERAs, for respiratory effort related arousals. Very important to know, is that the doctors who identified this syndrome also reported that the effects could be just as serious as with full-fledged OSA (sleepiness, effects on the heart, etc.). Some specialists have described "disordered breathing" as a spectrum, ranging from totally clear breathing through UARS through hypopneas and apneas-mixed-with-hypopneas all the way to severe OSA.

Another thing to be aware of, is that still other experts in sleep medicine consider that UARS is not really a separate syndrome, but that many UARS cases are just OSA where the testing equipment was not sensitive enough to detect all the hypopneas. (I was told this at the excellent Johns Hopkins Sleep Center.)

OK, so where does that leave you? You have a diagnosis of UARS, which leading sleep doctors consider to be a form of OSA that has the same, life-threatening effects as OSA with a high AHI does. Your insurance company, however, may be using a numerical cut-off, so that below a certain AHI they don't consider the symptoms "severe enough" to cover CPAP. Unless you have enough money to buy a CPAP machine on your own, you need your sleep doctor to help you convince the insurance company watchdogs that you need CPAP, at least for a trial period. He or she might do this by convincing them that their cut-off criteria are out of date and should be over-ridden. Or - and this is what my knowledgeable and creative first sleep specialist did - your doctor can call the diagnosis of "respiratory insufficiency - upper airway resistance syndrome" (it's a different "diagnosis code" from the usual code for OSA), and make a strong recommendation for a trial period with CPAP, on the basis of medical necessity. My doctor's letter, which did succeed in getting that trial period, was written on his letterhead and said things like, "I am a board-certified physicial in sleep-medicine who has seen [name] for her hypersomnolence. I have reviewed her history in great detail [etc. etc.].... I feel that it is very likely that this patient has the upper airway resistance syndrome. I believe that the best course of action at this time would be for the patient to have a trial of using nocturnal CPAP at home for approximately one month. I ask that you give your every consideration towards covering the expenses of this device. The UARS is detrimental to this patient's health as it results in significant hypersomnolence, which carries with it the risk of harm to the patient from falling asleep while engaged in activity as well as decreasing work performance." [Hypersomnolence is excessive sleepiness.] ... The letter worked, they granted the trial even though this company's cut-off was 15 AHI and my first test said ZERO AHI. The results of the trial period were dramatic, I got authorization to keep the machine for a year, then I got a sleep test at Johns Hopkins which used better equipment and showed my apneas and hypopneas.

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