I proceeded to the initial consult with an open mind. Well, fairly open anyway. I was pretty sure a CPAP would not be in my future regardless of the outcome of the study. I can’t sleep with any noise or lights and I’m claustrophobic when it comes to having my movement (or escape route) restricted; so I am convinced I would never sleep another night if I had to wear an elephant mask. People say you get used to them. I honestly don’t see how.
I was given a questionnaire to answer about my health background and my sleep habits which I answered honestly. One set of questions was to rate from 0 to 3, with 0 being never and 3 being probable, how likely I was to fall asleep in certain situations.
- Watching TV = 1 (I admit I may fall asleep watching TV IF it is in the evening after getting up at 5:30 a.m. and working all day. I think most people would.)
- Reading a book = 1 (Same reason and circumstance as watching TV.)
- Laying down on the couch = 2 (If I lay down on the couch, I’m doing so with the express intent of taking a nap, so…)
- In class or a meeting = 0 (Not saying I’ve never wished I was somewhere else, but I’ve never fallen asleep in class or during a meeting – though I may have put people to sleep.)
- Stopped at a traffic light = 0 (Never!!!)
An appointment was made for me to return to pick up the home monitor and to be taught how to use it. I dutifully returned on the appointed day and met with a Dr. Z (Ph.D) who then proceeded to explain how the home monitor would only check for four types of hypopnea and oximetric measurements, but that the sleep center tests would check for 20. I was okay with this. However, he went on to say if the home test showed I had any hypopnea and/or oximetric episodes, I would need to come in for the more involved (read “more expensive”) sleep center study. I asked what would happen if it came back with none of these. He replied that I would still have to come in for the sleep center study, because the home test only tested for four types.
Okay, so why am I paying $145 for this home test? If I have to come in to the sleep center regardless of the results, isn’t this home test pretty pointless and a waste of time and money?
Obviously disappointed with this new bit of information (and starting to feel more skeptical), I asked that question and never got a satisfactory answer. So I asked what percentage of patients who do the sleep study are not diagnosed with sleep apnea. Response – less than 1%. Why is the number so low? He said it is because patients wouldn’t have been referred for the study if they did not already have all the symptoms of sleep apnea. What are all the symptoms? All I told my doctor is that I snore – that’s just one symptom. This is where it gets interesting.
He pulls out my chart and says, "well you answered yes to this health question."
I looked and said, “no, I didn’t.”
Clearly my “no” had been scratched out and changed to a “yes.” He goes on and says, "well you scored a 10 on the risk questions related to your likelihood of falling asleep in certain situations."
I looked at my chart and saw all of my “0s” had been changed to “3s.” Who changed these answers and why? Now I’m more than skeptical, I’m starting to believe there could be some fraud going on. Dr. Z says, "well I think you need to discuss that with Dr. K when the results of the home test are provided."
Okay, I will.
Now to make this story a little shorter, I’m going to summarize the next evolution. I took home the sleep monitor, set it all up according to instructions (checked it twice), went to sleep, returned the monitor to the office the next day. Dr. Z downloads the data and says, “Wow – the oximeter wasn’t working and there is no data, but you had zero hypopneas and breathed regularly throughout the night. The oximeter must be faulty. I will talk to Dr. K about this and the issue with your records and get back to you on the next steps.”
One week later, still no word. I finally call the office to follow-up and the next day I get a call from the elusive Dr. K asking to see me right away.
My meeting with Dr. K went well, but did nothing to assuage my skepticisim. Summary of what I was told:
- Record change was an inadvertent charting error on the part of the Nurse and an accurate copy was sent to the insurance company. (I accepted this, though I didn’t really believe it.)
- He is sorry the home monitor did not work and will refund my $145 for the test. (Okay, thanks – I like getting money back.)
- No need to do another home study, but I should do a sleep center study. (Why if I showed no hypopnea on the home test?)
- Studies show most people have sleep apnea and doctors are encouraged to diagnose it to the maximum extent possible much like advocating for getting flu shots because apnea leads to stroke, heart attack, diabetes, weight gain, and I think hang-nails. (Yes, he really said that! – well I added in the hang-nail part.) Also, don’t get me wrong – I truly understand the seriousness of these conditions and don’t dispute that sleep apnea, along with a lot of other risk factors such as diet, obesity, smoking, etc., increases the chances of experiencing or developing these health issues.
- If the first sleep study shows no sleep apnea, it will need to be repeated so that we can take measures to ensure you sleep on your back the whole night. “Why is that important?” “Because people are most likely to have sleep apnea when sleeping on their backs.” Well of course they do! It’s gravity. When your tongue relaxes when you fall asleep, in what position are you most likely to have it fall back and obstruct your breathing? On your back. “Well, what if I never sleep on my back?” “You usually don’t know when you are sleeping on your back.” What I am translating this conversation to mean is - we are going to keep testing you until we prove you have sleep apnea and can force you into a CPAP, a mouth guard (which I am told doesn’t work for individuals who already have a narrow airway), or surgery.
I’m not sure I’ll go back for the overnight study. I’m just too skeptical at this point and knowing my records were changed (inadvertently or not) just makes me too suspicious. Plus, I cannot think of one single individual I know who has had a sleep study and been told they do not have sleep apnea and do not need a CPAP. (Well I do know one, but she is pretty much a nut-bucket anyway and probably didn’t need the sleep study in the first place!)
I know there are folks out there who swear they’ve never felt better since they have their CPAP to keep them company at night. Good for you – I’m happy that works for you. As for me, I’m still leaning towards SCAM.