The folks on this forum seem to be the only people that know anything about CPAP.
Doctor's office makes various self-contradictory statements about pretty much every aspect of the process - how sleep studies work, how the cpap will be delivered and demonstrated to me, who will provide support, and heck, even submitting the insurance forms for precertification. Sleep lab just follows orders, "ve know nothink". Insurance knows nothink because either Dr didn't send stuff as they claimed (possibly as their story changes), or the insurance threw it away (they have done that before). Dr's says "compliance is well over 90% long term" - but where do they get this data? Patient's frequenly fib about compliance because they are intimidated by Drs. Without hard data from the machines showing actual usage, who knows?
The way I see it, this is the honeymoon period where all these folks are on their best behavior. Later on is when the customer neglect and abuse really ramps up. What am I hearing?: I AM ON MY OWN. With whatever brick they dump on me, whatever mask, and liable for unspecified copays for TWO sleep study nights and an unspecified device - running to as much as $11k.
I'll read Tess Graham's book and resume my serious long term weight reduction.
Rick
Newly Diagnosed and very angry
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chunkyfrog
- Posts: 34545
- Joined: Mon Jul 12, 2010 5:10 pm
- Location: Nowhere special--this year in particular.
Re: Newly Diagnosed and very angry
Rick, your experience is all too common.
Most here recognize our treatment has to be DIY, or it just doesn't happen.
It's just the way it is.
Most here recognize our treatment has to be DIY, or it just doesn't happen.
It's just the way it is.
_________________
| Mask: AirFit™ P10 For Her Nasal Pillow CPAP Mask with Headgear |
| Additional Comments: Airsense 10 Autoset for Her |
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DeadlySleep
- Posts: 372
- Joined: Mon Nov 05, 2012 7:30 am
Re: Newly Diagnosed and very angry
My opinion could be wrong, but there seems to be many sorry-ass doctors.
If I ever had a job where I did not follow up with the customers to see that they were getting good results, I would have been fired in a hurry.
If I ever had a job where I did not follow up with the customers to see that they were getting good results, I would have been fired in a hurry.
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sleepy1235
- Posts: 248
- Joined: Sat Jul 27, 2013 8:15 am
Re: Newly Diagnosed and very angry
Your experience is not uncommon. The practice of sleep medicine is shoddy.
I got poor treatment and a brick like you. This is all too common for apnea treatment.
The sleep centers often don't follow any written protocol either.
The following has information that you might find useful. I also suggest learning the use of the certified letter
SLEEP RECOMMENDATIONS (10/11/2014 Version 2)
INTRODUCTION:
I think the practice of sleep medicine would be improved if sleep patients asked more questions of their doctors and more critically inquired about their doctor’s proposed plan of action. Patients should demand at least a minimal standard of care. Also, if patients are more informed they can better evaluate their doctor’s performance and competence.
Unfortunately there are no biochemical markers for sleepiness or other objective biometric measures. So doctors aren’t very accountable for results. A lot of sleep doctors are just mills where patients are pushed through and they are seen as cash flow sources.
If even a small percentage of patients started to ask many of the following questions it would have a real impact on the practice of sleep medicine. I give permission to share this document hither and yon.
Also, note that I am providing not just a link, but the full names of the authors and the title of the paper, along with the journal. This will allow you to visit a university and use the library computers to pull up this article. Also, I refer to CPAP machines as a catch all for CPAP’s and variants such as BPAP’s, APAP’s.
DISCLAIMER: I am not a doctor. You read this at your own risk. This is my view of the topics involved.
TESTING:
Paper and Pencil Tests
A patient assumes that the doctor and therapists are on their side and supportive of a sick person. However, apnea message boards often get panicked messages that the therapist or doctor is threatening to get their drivers license suspended unless they are using their CPAP machines.
The design of the face equipment, whether mask or nasal pillows, is in my opinion often designed unsatisfactorily. Also, the equipment is not hypoallergenic so you may actually get an allergic reaction to it, yet your doctor or therapist might be threatening to get your drivers’ license suspended.
There are endless complaints about the comfort of the face masks on apnea boards, yet your doctor or therapist might be threatening to get your drivers’ license suspended.
Often the arrangement is that the equipment is rented and there is a cash flow so they aren’t getting paid if you don’t use it.
QUESTION FOR YOUR DOCTOR: Have you or any working in this office ever act or threaten to act to get the patient’s drivers’ license suspended?
Sleep Study
1. Protocol: If your doctor is going to request a sleep study ask him for a copy of the written protocol of the sleep study and ask him what it is based on, that is what specific published sleep protocol studies it was based on. Preferably it should be a standard protocol that has a name and a published reference paper.
Incredibly in a paper, “Clinical Guidelines for the Manual Titration of Positive Airway Pressure in Patients with Obstructive Sleep Apnea,” written by the Positive Airway Pressure Titration Task Force of the American Academy of Sleep Medicine, published in the Journal of Sleep Medicine, by Task Force Members: Clete A. Kushida, M.D., Ph.D., RPSGT (Chair); Alejandro Chediak, M.D. (Vice-Chair); Richard B. Berry, M.D.; Lee K. Brown, M.D.; David Gozal, M.D.; Conrad Iber, M.D.; Sairam Parthasarathy, M.D.; Stuart F. Quan, M.D.; James A. Rowley, M.D., Vol. 4 No. 2, 2008, found that 22% of certified sleep centers didn’t have a written protocol for their sleep studies. The paper is online here:
http://www.aasmnet.org/resources/clinic ... 040210.pdf
How a sleep center could be “certified” without having a written protocol in the year 2008 is just astounding and should be an indication to the reader how low the standards are in sleep medicine. A minimal level of acceptable practice should be not only should there be a certified sleep standard which is based on published scientific studies, but there should be a kept record of the sleep center how well the protocol has been adhered to.
QUESTIONS FOR YOUR DOCTOR:
1. Do you have a written protocol for a sleep study?
2. What is it based on?
3. Can I get a copy?
4. How well do you adhere to the study and what is the record of your adherence?
If the doctor isn’t going to answer these questions or is dismissive of your questions you should walk right then. Be polite, say “this isn’t going to work out,” and leave.
2. Apneas and Respiratory Effort Related Arousals (RERA): RERA’s can keep you from getting a good night’s sleep. Some doctors don’t even consider them. The problem is also referred to as Upper Airway Resistance Syndrome (UARS).
The following is an online paper on this problem:
http://69.36.35.38/accp/pccsu/upper-air ... e?page=0,3
“Upper Airway Resistance Syndrome,” PCCSU Article, 07.01.11, by Olukayode Ogunrinde, MD; Herbert J. Yue, MD; and Christian Guilleminault, MD, BiolD. The PCCSU is a publication of the American College of Chest Physicians. “College” in this case refers to a professional society and not an actually physical college.
QUESTIONS FOR YOUR DOCTOR:
1. In evaluating the sleep study will UARS be looked for and evaluated in the results?
2. Is the sleep study going to only look for the pressures at which apneas disappear or will the elimination of UARS be attempted?
3. Does their protocol for a sleep study involved assessment for UARS and its treatment?
Your doctor should have valid answers for each of these questions and if not or if your doctor is dismissive you should leave.
IN GENERAL IF YOUR DOCTOR IS DISMISSIVE OF YOUR CONCERNS NOW IS THE TIME TO LEAVE.
3. Sleep Study Report: Just getting a pressure setting isn’t enough. You need a copy of your report with it fully explained to you. The report should include data and summaries of all the data that was collected in the sleep study. Also you will want to have the report to give a copy to your next sleep doctor. They will request a copy.
QUESTIONS FOR YOUR DOCTOR:
1. Will there be a written report of the sleep study?
2. What will the report cover?
3. Will I get a full copy of the written report?
4. Will the report be explained to me?
If any of the answers are no you should leave right then.
4. Sleep Study Facility: Some of these are not very nice places to sleep. Poor pillows or a limited selection of pillows, hard mattresses, run down furniture. One person in a forum claimed that his sleep study was done with him sleeping on a hospital gurney. Also, you will be much more comfortable sleeping on your own bed and should ask about the possibility of a home study. A home study can be done over multiple days and be a more representative sample of your sleep. It will be how you actually sleep in the location where you regular sleep. A sleep study in a facility will be just one day. For those of you knowing your statistics, a single measurement (N=1) is always problematic.
The sleep medicine profession calls the in facility study the “gold standard” of sleep studies as well as it might be for them a lot of “gold.” You can consider your needs instead of their cash flow.
QUESTIONS FOR YOUR DOCTOR:
1. What are the facilities for the sleep study?
2. Can you visit them prior to your sleep study?
3. Can I have a home study instead?
If you don’t get a satisfactory answer I would leave. If you can’t visit prior I would leave also.
CPAP Machine
Again I am using CPAP as a catchall for CPAP, APAP, BPAP, and VPAP.
YOU NEED TO BE ASKING THESE QUESTIONS AT YOUR FIRST VISIT TO YOUR SLEEP DOCTOR AND BEFORE YOUR SLEEP STUDY: You don’t want to have the sleep study done, and find out that you now have problems getting a prescription from your doctor for the equipment you need.
Some doctors or health institutions have agreements with specific providers of CPAP equipment.
Also, you want to be able to see how effective your treatment is. Is the recommended pressure working, the recommended equipment working? You will want to be able to independently review your own treatment. You will also want statistics of your treatment that are useful for both you and your doctor to assess how well your treatment is working. So you will want a CPAP machine that records relevant sleep parameters during your sleep and does detailed graphs of your sleep as well as good summary statistics.
CPAP machines are now being made with oximeter (pocket over your finger that measures the saturation of oxygen in your blood) connections so you can wear one every night and see how well your breathing is oxygenating your blood. After all the concern with apneas is that they reduced the oxygen in your blood causing you to wake up. Oxygenation is represented with the symbol SpO2. (Saturation percent O2). It isn’t actually the free oxygen molecule in your blood solution but the percentage of your hemoglobin which is oxygenated. You will want an oximeter.
Personal observation is that your oxygen can drop and the machines will not record an apnea and the machine will record an apnea and there will be no drop in oxygen. The author of this paper has a very low rate of apneas and so it might be that a few false positives is normal for the machine algorithms evaluating your sleep.
You will want the sleep machine to track and report on the following variable and provide summary statistics for each one. However, there is no machine that the author knows of that will provide summary statistics on each one, but it would do some good to start asking these questions. I don’t think any of the CPAP software packages do trending at all which is really appalling or have data that can be exported to EXCEL. It really is primitive what the sleep software capability is. The table is as follows:
Parameter Comments
Snoring Index
Pressure Applied This will be the pressure generated by the machine at its exit port. Unfortunately there isn’t a sensor at the other end by the face or nose to measure actual pressure applied to the face.
The pressure applied at the nose is probably very close to the pressure supplied at the machine until the point where any leak exceeds the ability of the machine to supply air at the required pressure.
Pressure would be very important if you have what are called APAPs or VPAPs.
Leaks This is very critical. If you have a leak you very well might not be getting the pressure that you need because the pressure is being lost through the leak. Also, if you choose nasal pillows you will want to know if you are leaking through your mouth and need a chin strap.
Minute ventilation Important. You can see how you have regular breathing and when you are having irregular breathing.
Flow Limitations The tool can detect flow limitations. Where you are struggling to breath. Important to have. Unfortunately often there are no summary statistics.
Pulse rate
Events This is an algorithm that interprets the traces and identifies apnea events. I haven’t seen anything that tracks UARS events.
AHI Index This is a rate of events.
SpO2 You will only get this if you have an oximeter attached to the machine. It is very valuable to see how you oxygenation of your blood is doing.
There might be other parameters to be included here and for version 2 of this paper I plan to incorporate any that there might be and were overlooked.
You will want also to have software so you can get the data and review it yourself on your own computer. You should also understand the difference between median, mean, and modal before you see your doctor. Many websites on the Internet will explain it.
QUESTIONS FOR YOUR DOCTOR:
1. Is the CPAP machine and the face mask or nasal plug hypoallergenic?
The author of this paper had sores on his head because of prolonged exposure to rubber in the head straps. Incredibly enough the supplier said there wasn’t any hypoallergenic straps and was somewhat surprised by the question.
Cosmetics are held to a higher standard than CPAP accessories. I now have cotton strips to protect my head from allergic responses.
2. Will your CPAP machine be data recording and what type of data will it record and what type of statistics it will provide?
Insist that your CPAP machine be data recording. Also, make sure that the CPAP machine records more than the hours in which it was used. Machines that don’t have data recording or just record hours you slept are derisively called “bricks.” Use that term in discussing your CPAP with your doctor. The statistics are generally poor, but if apnea patients start asking I think manufacturers will respond. Also, there are likely variations among manufacturers and you can at least get the best of poor choices.
3. Ask your doctor if he or the medical institution he is with has a relationship with a specific CPAP equipment provider and whether the choice will be restricted to one provider.?
Often the medical institution or your doctor will have a specific relationship with a CPAP vendor or manufacturer and your choice might be restricted to something that is less than the best for you.
4. How the specific model and brand of the CPAP machine is chosen and the range of choices? If there is only one brand why?
This is another way of finding out if you are being locked into one brand or manufacturer. Also you can find out the limitations of your insurance. You can also discuss what you can purchase on your own.
5. Ask what are the options are for you purchasing the CPAP through a supplier you find.
You need to make sure that they don’t jump the gun and order a machine for you before you have agreed to a selection or that they have locked you into a selection.
Be prepared to refuse to pick up a CPAP that you didn’t agree to. I had to do that once. They told me that they ordered it, I told them to cancel, but it showed up anyways, and I refused to pick it up.
6. Ask whether your prescription will include an oximeter?
Basically it doesn’t matter what your doctor or the person who conducted your sleep study decided upon as your therapy if it doesn’t result in you getting adequate oxygen. If they are balking at including an oximeter in your prescription leave.
7. Ask about availability of CPAP software to review your results.
8. Ask whether Sleepyhead handles the data from the CPAP software.
The CPAP machine vendors have stopped making their software available to the general public. You should ask this question anyways. It really is unacceptable that it is unavailable. You will find that when others review the data it is very cursory and not really very good. Or that they having the software is a means to get your insurance company billed. There is Sleepyhead, an independent software writer, so you can work around this.
Check that Sleepyhead covers your brand of CPAP. If it doesn’t don’t get the CPAP. State that you absolutely won’t accept a machine that Sleepyhead software doesn’t cover. Your doctor probably won’t even know what Sleepyhead software is. You check online in forums what Sleepyhead software covers or at his website.
9. CPAP Machine Effectiveness: The CPAP pressures they determine are just numbers until the CPAP implements the therapy. They may say you need 12 cm-H2O, but it isn’t anything until you have a machine that effectively delivers 12 cm-H2O at different altitudes and temperatures, and has a hose that doesn’t collapse, pressure sensors that are accurate and reliable, air filters that aren’t blocked. IN PARTICULAR, you don’t want leaks due to badly fitting face masks or nasal pillows which result in you not getting your diagnosed settings.
If your doctor is not very informed about the equipment he or she isn’t really going to be helpful. He is just running sleep studies and then sending sleep patients off.
10. Access to CPAP machine settings: You will want to be able to adjust your own settings. Ask the doctor about it. The doctor will likely be aghast, but needs to be asked anyways.
Sleep Doctor’s Practice of Medicine
WARNING: Apnea diagnosis mills. I had a friend who I drove to a sleep testing facility with a very prestigious medical university. While waiting in the waiting room the personnel there were joking that everyone who shows up gets a diagnose of sleep apnea.
My friend had a problem of insomnia difficulty in falling asleep. He didn’t fit any of the diagnoses of apnea or have any of the indicating factors. He was diagnosed with sleep apnea at the center.
Another doctor thought this was ridiculous and another study was done and he was found not to have any apnea at all. You might have another type of sleep problem.
Follow Up: Once the sleep is done and you have been sold or rented the machine the sleep doctors often act if they are done. You will want the CPAP therapy to succeed and often it will. However, there can be problems. Due to the fact that “certified” sleep centers often don’t have written protocols and have just poor practice your CPAP settings won’t be working. It could be that you are misdiagnosed and it could be something else so you will want to ask the following questions.
QUESTIONS FOR YOUR DOCTOR:
1. How soon should the CPAP therapy take to solve the sleepiness problem?
2. What is the date in which we can determine that it definitely isn’t working or not working well enough? At what date if you are suffering from sleepiness can the therapy be considered as not working?
3. Can we set up a follow up to discuss effectiveness of the therapy?
You will likely get a vague answer or no answer at all to these two questions. You will hear that it varies from person to person, that there is sleep debt, etc. The thing though is that there should be some date in which it the therapy should work. You will notice that your doctor will ask for an appointment in a year. I think that is when you are eligible for another sleep study and are a source of cash.
4. If you needed to see the doctor about your sleep therapy, how many days would you typically have to wait?
You might have to wait months. Or you get a nurse who doesn’t know much about the equipment or doesn’t have answers.
You may have limited choices, but now is the time to avoid a sleep doctor isn’t going to be available or be concerned in your outcome.
5. What action will be done if the therapy is found not to be working? Will it involve another sleep study at your expense? Will the equipment be examined? What is the doctor's plan to get you from point A (sleepy) to point Z (rested)?
To you the goal is feeling rested, and if this isn't the doctors objective then I think there is a problem. The goal isn't to get a pressure for a CPAP machine, or to get a CPAP machine, or do a sleep study. The goal is to get a good night's sleep. The doctor should be clear on this.
If during your questioning you get a dismissive attitude toward these questions or the attitude that "I am the doctor and you are the patient" get another doctor. If the doctor doesn’t see a good night’s sleep as the objective, but just prescribing machines and pressures look for another doctor.
In particular watch out for the "sleep is mysterious" attitude. Yes, scientists are very challenged by the phenomenon of sleep, but either the doctor is effective or not and either you are going to get a good night's sleep or not. This "sleep is mysterious" attitude is often an excuse in which the doctor feels that he or she isn't accountable for a positive outcome.
If the doctor can’t get you a good night’s sleep what good is the doctor?
2nd Sleep Study: You will find this comes up readily once you are eligible for a study. You are trying to get answers about different issues and have different questions and the suggestion of another sleep study will come up.
QUESTIONS FOR YOUR DOCTOR:
1. Is a sleep study necessary and why? Will it provide the issues you are having and how?
2. What was wrong with the first sleep study such that the 2nd sleep study is necessary?
3. What can be done with the 2nd sleep study such that a 3rd sleep study isn’t required?
You don’t need to being doing sleep studies just to do sleep studies. It wastes you time and can be an excuse not to really investigate your situation. Also, it is true that your weight might have changed or you might have changed over a year, but then the question should be asked is why they didn’t give you a therapy prescription of pressures and equipment that would encompass real world variation.
CPAP SUPPLIES:
Some of the recommendations in terms of the frequency of when components need to be changed seems to me to be overly frequent. I would watch the air filter, but some of the other items seem to be just to sell replacement parts. Usually in industry the recommended parts replacement schedule by the vendor is critically evaluated with the purpose to see if the frequency can be lessened.
FORUMS:
Some forums are good, others are run by groups concerned to sell equipment and indentify new patients. So many sleep studies not done, so much equipment not sold, so much cash flow not lost. They also are dismissive of patient’s concerns. Doctors aren’t criticized. Go with http://www.cpaptalk.com. You will figure out which forum is run by the industry for their own benefit on your own.
GENERAL SUMMARY:
Cash flow seems to be the organizing principle of sleep therapy. You need to look out for yourself and critically evaluate your therapy, doctor, nurses, equipment, and anything else. If the doctors faced more informed and demanding patients I think that sleep therapy would improve.
ONLINE READING MATERIAL:
This is not meant to be comprehensive, nor is everything stated in the articles endorsed. These are merely articles which were found to be very interesting in understanding sleep medicine relative to UARS and apnea patients. The authors, journal, etc. is so that you can locate the article by other means if the link no longer works. You can often get these articles free at your local university medical library by using a terminal in the library.
Also, using some of the authors names may be useful in finding other articles with Google.
1. Paper on the evaluation of EEG signals during sleep. https://advancedbrainmonitoring.app.box ... m80xdhyw78
Elsevier Press, online article “Scoring Accuracy of automated sleep staging from a bipolar electroocular recording compared to manual scoring by multiple raters,” “Sleep Medicine,” Carl Stepnowsky, Daniel Levendowski, Djordje Popovic, Indu Ayappa, David M. Rapoport. (2013).
2. “Relative Occurance of Flow Limitation and Snoring During Continuous Positive Airway Pressure Titration,” CHEST, Sept. 1998, Indu Ayappa, Robert G. Norman, Jean-Jacques Hosselet, Roger A. Gruenke, Joyce A. Walsleben, David M. Rapoport. What this article shows is that snoring and UARS aren’t very well related.
3. “Upper Airway Resistance Syndrome,” CHEST, July 1, 2011, Olukayode Ogunrinde, Herbert J. Yue, Christian Guilleminault. Very good introduction to UARS. http://69.36.35.38/accp/pccsu/upper-air ... e?page=0,3
4. “Clinical Guidelines for the Manual Titration of Positive Airway Pressure in Patients with Obstructive Sleep Apnea,” Positive Airway Titration Task Force of the American Academy of Sleep Medicine, (Clete A. Kushida, Alejandro Chediak, Richard B. Berry, Lee K. Brown, David Gozel, Conrad Iber, Sairam Parthasarathy, Stuart F. Quan, James A. Rowley) Journal of Clinical Sleep Medicine, Vol. 4 No. 2, 2008. http://www.aasmnet.org/resources/clinic ... 040210.pdf
5.
I got poor treatment and a brick like you. This is all too common for apnea treatment.
The sleep centers often don't follow any written protocol either.
The following has information that you might find useful. I also suggest learning the use of the certified letter
SLEEP RECOMMENDATIONS (10/11/2014 Version 2)
INTRODUCTION:
I think the practice of sleep medicine would be improved if sleep patients asked more questions of their doctors and more critically inquired about their doctor’s proposed plan of action. Patients should demand at least a minimal standard of care. Also, if patients are more informed they can better evaluate their doctor’s performance and competence.
Unfortunately there are no biochemical markers for sleepiness or other objective biometric measures. So doctors aren’t very accountable for results. A lot of sleep doctors are just mills where patients are pushed through and they are seen as cash flow sources.
If even a small percentage of patients started to ask many of the following questions it would have a real impact on the practice of sleep medicine. I give permission to share this document hither and yon.
Also, note that I am providing not just a link, but the full names of the authors and the title of the paper, along with the journal. This will allow you to visit a university and use the library computers to pull up this article. Also, I refer to CPAP machines as a catch all for CPAP’s and variants such as BPAP’s, APAP’s.
DISCLAIMER: I am not a doctor. You read this at your own risk. This is my view of the topics involved.
TESTING:
Paper and Pencil Tests
A patient assumes that the doctor and therapists are on their side and supportive of a sick person. However, apnea message boards often get panicked messages that the therapist or doctor is threatening to get their drivers license suspended unless they are using their CPAP machines.
The design of the face equipment, whether mask or nasal pillows, is in my opinion often designed unsatisfactorily. Also, the equipment is not hypoallergenic so you may actually get an allergic reaction to it, yet your doctor or therapist might be threatening to get your drivers’ license suspended.
There are endless complaints about the comfort of the face masks on apnea boards, yet your doctor or therapist might be threatening to get your drivers’ license suspended.
Often the arrangement is that the equipment is rented and there is a cash flow so they aren’t getting paid if you don’t use it.
QUESTION FOR YOUR DOCTOR: Have you or any working in this office ever act or threaten to act to get the patient’s drivers’ license suspended?
Sleep Study
1. Protocol: If your doctor is going to request a sleep study ask him for a copy of the written protocol of the sleep study and ask him what it is based on, that is what specific published sleep protocol studies it was based on. Preferably it should be a standard protocol that has a name and a published reference paper.
Incredibly in a paper, “Clinical Guidelines for the Manual Titration of Positive Airway Pressure in Patients with Obstructive Sleep Apnea,” written by the Positive Airway Pressure Titration Task Force of the American Academy of Sleep Medicine, published in the Journal of Sleep Medicine, by Task Force Members: Clete A. Kushida, M.D., Ph.D., RPSGT (Chair); Alejandro Chediak, M.D. (Vice-Chair); Richard B. Berry, M.D.; Lee K. Brown, M.D.; David Gozal, M.D.; Conrad Iber, M.D.; Sairam Parthasarathy, M.D.; Stuart F. Quan, M.D.; James A. Rowley, M.D., Vol. 4 No. 2, 2008, found that 22% of certified sleep centers didn’t have a written protocol for their sleep studies. The paper is online here:
http://www.aasmnet.org/resources/clinic ... 040210.pdf
How a sleep center could be “certified” without having a written protocol in the year 2008 is just astounding and should be an indication to the reader how low the standards are in sleep medicine. A minimal level of acceptable practice should be not only should there be a certified sleep standard which is based on published scientific studies, but there should be a kept record of the sleep center how well the protocol has been adhered to.
QUESTIONS FOR YOUR DOCTOR:
1. Do you have a written protocol for a sleep study?
2. What is it based on?
3. Can I get a copy?
4. How well do you adhere to the study and what is the record of your adherence?
If the doctor isn’t going to answer these questions or is dismissive of your questions you should walk right then. Be polite, say “this isn’t going to work out,” and leave.
2. Apneas and Respiratory Effort Related Arousals (RERA): RERA’s can keep you from getting a good night’s sleep. Some doctors don’t even consider them. The problem is also referred to as Upper Airway Resistance Syndrome (UARS).
The following is an online paper on this problem:
http://69.36.35.38/accp/pccsu/upper-air ... e?page=0,3
“Upper Airway Resistance Syndrome,” PCCSU Article, 07.01.11, by Olukayode Ogunrinde, MD; Herbert J. Yue, MD; and Christian Guilleminault, MD, BiolD. The PCCSU is a publication of the American College of Chest Physicians. “College” in this case refers to a professional society and not an actually physical college.
QUESTIONS FOR YOUR DOCTOR:
1. In evaluating the sleep study will UARS be looked for and evaluated in the results?
2. Is the sleep study going to only look for the pressures at which apneas disappear or will the elimination of UARS be attempted?
3. Does their protocol for a sleep study involved assessment for UARS and its treatment?
Your doctor should have valid answers for each of these questions and if not or if your doctor is dismissive you should leave.
IN GENERAL IF YOUR DOCTOR IS DISMISSIVE OF YOUR CONCERNS NOW IS THE TIME TO LEAVE.
3. Sleep Study Report: Just getting a pressure setting isn’t enough. You need a copy of your report with it fully explained to you. The report should include data and summaries of all the data that was collected in the sleep study. Also you will want to have the report to give a copy to your next sleep doctor. They will request a copy.
QUESTIONS FOR YOUR DOCTOR:
1. Will there be a written report of the sleep study?
2. What will the report cover?
3. Will I get a full copy of the written report?
4. Will the report be explained to me?
If any of the answers are no you should leave right then.
4. Sleep Study Facility: Some of these are not very nice places to sleep. Poor pillows or a limited selection of pillows, hard mattresses, run down furniture. One person in a forum claimed that his sleep study was done with him sleeping on a hospital gurney. Also, you will be much more comfortable sleeping on your own bed and should ask about the possibility of a home study. A home study can be done over multiple days and be a more representative sample of your sleep. It will be how you actually sleep in the location where you regular sleep. A sleep study in a facility will be just one day. For those of you knowing your statistics, a single measurement (N=1) is always problematic.
The sleep medicine profession calls the in facility study the “gold standard” of sleep studies as well as it might be for them a lot of “gold.” You can consider your needs instead of their cash flow.
QUESTIONS FOR YOUR DOCTOR:
1. What are the facilities for the sleep study?
2. Can you visit them prior to your sleep study?
3. Can I have a home study instead?
If you don’t get a satisfactory answer I would leave. If you can’t visit prior I would leave also.
CPAP Machine
Again I am using CPAP as a catchall for CPAP, APAP, BPAP, and VPAP.
YOU NEED TO BE ASKING THESE QUESTIONS AT YOUR FIRST VISIT TO YOUR SLEEP DOCTOR AND BEFORE YOUR SLEEP STUDY: You don’t want to have the sleep study done, and find out that you now have problems getting a prescription from your doctor for the equipment you need.
Some doctors or health institutions have agreements with specific providers of CPAP equipment.
Also, you want to be able to see how effective your treatment is. Is the recommended pressure working, the recommended equipment working? You will want to be able to independently review your own treatment. You will also want statistics of your treatment that are useful for both you and your doctor to assess how well your treatment is working. So you will want a CPAP machine that records relevant sleep parameters during your sleep and does detailed graphs of your sleep as well as good summary statistics.
CPAP machines are now being made with oximeter (pocket over your finger that measures the saturation of oxygen in your blood) connections so you can wear one every night and see how well your breathing is oxygenating your blood. After all the concern with apneas is that they reduced the oxygen in your blood causing you to wake up. Oxygenation is represented with the symbol SpO2. (Saturation percent O2). It isn’t actually the free oxygen molecule in your blood solution but the percentage of your hemoglobin which is oxygenated. You will want an oximeter.
Personal observation is that your oxygen can drop and the machines will not record an apnea and the machine will record an apnea and there will be no drop in oxygen. The author of this paper has a very low rate of apneas and so it might be that a few false positives is normal for the machine algorithms evaluating your sleep.
You will want the sleep machine to track and report on the following variable and provide summary statistics for each one. However, there is no machine that the author knows of that will provide summary statistics on each one, but it would do some good to start asking these questions. I don’t think any of the CPAP software packages do trending at all which is really appalling or have data that can be exported to EXCEL. It really is primitive what the sleep software capability is. The table is as follows:
Parameter Comments
Snoring Index
Pressure Applied This will be the pressure generated by the machine at its exit port. Unfortunately there isn’t a sensor at the other end by the face or nose to measure actual pressure applied to the face.
The pressure applied at the nose is probably very close to the pressure supplied at the machine until the point where any leak exceeds the ability of the machine to supply air at the required pressure.
Pressure would be very important if you have what are called APAPs or VPAPs.
Leaks This is very critical. If you have a leak you very well might not be getting the pressure that you need because the pressure is being lost through the leak. Also, if you choose nasal pillows you will want to know if you are leaking through your mouth and need a chin strap.
Minute ventilation Important. You can see how you have regular breathing and when you are having irregular breathing.
Flow Limitations The tool can detect flow limitations. Where you are struggling to breath. Important to have. Unfortunately often there are no summary statistics.
Pulse rate
Events This is an algorithm that interprets the traces and identifies apnea events. I haven’t seen anything that tracks UARS events.
AHI Index This is a rate of events.
SpO2 You will only get this if you have an oximeter attached to the machine. It is very valuable to see how you oxygenation of your blood is doing.
There might be other parameters to be included here and for version 2 of this paper I plan to incorporate any that there might be and were overlooked.
You will want also to have software so you can get the data and review it yourself on your own computer. You should also understand the difference between median, mean, and modal before you see your doctor. Many websites on the Internet will explain it.
QUESTIONS FOR YOUR DOCTOR:
1. Is the CPAP machine and the face mask or nasal plug hypoallergenic?
The author of this paper had sores on his head because of prolonged exposure to rubber in the head straps. Incredibly enough the supplier said there wasn’t any hypoallergenic straps and was somewhat surprised by the question.
Cosmetics are held to a higher standard than CPAP accessories. I now have cotton strips to protect my head from allergic responses.
2. Will your CPAP machine be data recording and what type of data will it record and what type of statistics it will provide?
Insist that your CPAP machine be data recording. Also, make sure that the CPAP machine records more than the hours in which it was used. Machines that don’t have data recording or just record hours you slept are derisively called “bricks.” Use that term in discussing your CPAP with your doctor. The statistics are generally poor, but if apnea patients start asking I think manufacturers will respond. Also, there are likely variations among manufacturers and you can at least get the best of poor choices.
3. Ask your doctor if he or the medical institution he is with has a relationship with a specific CPAP equipment provider and whether the choice will be restricted to one provider.?
Often the medical institution or your doctor will have a specific relationship with a CPAP vendor or manufacturer and your choice might be restricted to something that is less than the best for you.
4. How the specific model and brand of the CPAP machine is chosen and the range of choices? If there is only one brand why?
This is another way of finding out if you are being locked into one brand or manufacturer. Also you can find out the limitations of your insurance. You can also discuss what you can purchase on your own.
5. Ask what are the options are for you purchasing the CPAP through a supplier you find.
You need to make sure that they don’t jump the gun and order a machine for you before you have agreed to a selection or that they have locked you into a selection.
Be prepared to refuse to pick up a CPAP that you didn’t agree to. I had to do that once. They told me that they ordered it, I told them to cancel, but it showed up anyways, and I refused to pick it up.
6. Ask whether your prescription will include an oximeter?
Basically it doesn’t matter what your doctor or the person who conducted your sleep study decided upon as your therapy if it doesn’t result in you getting adequate oxygen. If they are balking at including an oximeter in your prescription leave.
7. Ask about availability of CPAP software to review your results.
8. Ask whether Sleepyhead handles the data from the CPAP software.
The CPAP machine vendors have stopped making their software available to the general public. You should ask this question anyways. It really is unacceptable that it is unavailable. You will find that when others review the data it is very cursory and not really very good. Or that they having the software is a means to get your insurance company billed. There is Sleepyhead, an independent software writer, so you can work around this.
Check that Sleepyhead covers your brand of CPAP. If it doesn’t don’t get the CPAP. State that you absolutely won’t accept a machine that Sleepyhead software doesn’t cover. Your doctor probably won’t even know what Sleepyhead software is. You check online in forums what Sleepyhead software covers or at his website.
9. CPAP Machine Effectiveness: The CPAP pressures they determine are just numbers until the CPAP implements the therapy. They may say you need 12 cm-H2O, but it isn’t anything until you have a machine that effectively delivers 12 cm-H2O at different altitudes and temperatures, and has a hose that doesn’t collapse, pressure sensors that are accurate and reliable, air filters that aren’t blocked. IN PARTICULAR, you don’t want leaks due to badly fitting face masks or nasal pillows which result in you not getting your diagnosed settings.
If your doctor is not very informed about the equipment he or she isn’t really going to be helpful. He is just running sleep studies and then sending sleep patients off.
10. Access to CPAP machine settings: You will want to be able to adjust your own settings. Ask the doctor about it. The doctor will likely be aghast, but needs to be asked anyways.
Sleep Doctor’s Practice of Medicine
WARNING: Apnea diagnosis mills. I had a friend who I drove to a sleep testing facility with a very prestigious medical university. While waiting in the waiting room the personnel there were joking that everyone who shows up gets a diagnose of sleep apnea.
My friend had a problem of insomnia difficulty in falling asleep. He didn’t fit any of the diagnoses of apnea or have any of the indicating factors. He was diagnosed with sleep apnea at the center.
Another doctor thought this was ridiculous and another study was done and he was found not to have any apnea at all. You might have another type of sleep problem.
Follow Up: Once the sleep is done and you have been sold or rented the machine the sleep doctors often act if they are done. You will want the CPAP therapy to succeed and often it will. However, there can be problems. Due to the fact that “certified” sleep centers often don’t have written protocols and have just poor practice your CPAP settings won’t be working. It could be that you are misdiagnosed and it could be something else so you will want to ask the following questions.
QUESTIONS FOR YOUR DOCTOR:
1. How soon should the CPAP therapy take to solve the sleepiness problem?
2. What is the date in which we can determine that it definitely isn’t working or not working well enough? At what date if you are suffering from sleepiness can the therapy be considered as not working?
3. Can we set up a follow up to discuss effectiveness of the therapy?
You will likely get a vague answer or no answer at all to these two questions. You will hear that it varies from person to person, that there is sleep debt, etc. The thing though is that there should be some date in which it the therapy should work. You will notice that your doctor will ask for an appointment in a year. I think that is when you are eligible for another sleep study and are a source of cash.
4. If you needed to see the doctor about your sleep therapy, how many days would you typically have to wait?
You might have to wait months. Or you get a nurse who doesn’t know much about the equipment or doesn’t have answers.
You may have limited choices, but now is the time to avoid a sleep doctor isn’t going to be available or be concerned in your outcome.
5. What action will be done if the therapy is found not to be working? Will it involve another sleep study at your expense? Will the equipment be examined? What is the doctor's plan to get you from point A (sleepy) to point Z (rested)?
To you the goal is feeling rested, and if this isn't the doctors objective then I think there is a problem. The goal isn't to get a pressure for a CPAP machine, or to get a CPAP machine, or do a sleep study. The goal is to get a good night's sleep. The doctor should be clear on this.
If during your questioning you get a dismissive attitude toward these questions or the attitude that "I am the doctor and you are the patient" get another doctor. If the doctor doesn’t see a good night’s sleep as the objective, but just prescribing machines and pressures look for another doctor.
In particular watch out for the "sleep is mysterious" attitude. Yes, scientists are very challenged by the phenomenon of sleep, but either the doctor is effective or not and either you are going to get a good night's sleep or not. This "sleep is mysterious" attitude is often an excuse in which the doctor feels that he or she isn't accountable for a positive outcome.
If the doctor can’t get you a good night’s sleep what good is the doctor?
2nd Sleep Study: You will find this comes up readily once you are eligible for a study. You are trying to get answers about different issues and have different questions and the suggestion of another sleep study will come up.
QUESTIONS FOR YOUR DOCTOR:
1. Is a sleep study necessary and why? Will it provide the issues you are having and how?
2. What was wrong with the first sleep study such that the 2nd sleep study is necessary?
3. What can be done with the 2nd sleep study such that a 3rd sleep study isn’t required?
You don’t need to being doing sleep studies just to do sleep studies. It wastes you time and can be an excuse not to really investigate your situation. Also, it is true that your weight might have changed or you might have changed over a year, but then the question should be asked is why they didn’t give you a therapy prescription of pressures and equipment that would encompass real world variation.
CPAP SUPPLIES:
Some of the recommendations in terms of the frequency of when components need to be changed seems to me to be overly frequent. I would watch the air filter, but some of the other items seem to be just to sell replacement parts. Usually in industry the recommended parts replacement schedule by the vendor is critically evaluated with the purpose to see if the frequency can be lessened.
FORUMS:
Some forums are good, others are run by groups concerned to sell equipment and indentify new patients. So many sleep studies not done, so much equipment not sold, so much cash flow not lost. They also are dismissive of patient’s concerns. Doctors aren’t criticized. Go with http://www.cpaptalk.com. You will figure out which forum is run by the industry for their own benefit on your own.
GENERAL SUMMARY:
Cash flow seems to be the organizing principle of sleep therapy. You need to look out for yourself and critically evaluate your therapy, doctor, nurses, equipment, and anything else. If the doctors faced more informed and demanding patients I think that sleep therapy would improve.
ONLINE READING MATERIAL:
This is not meant to be comprehensive, nor is everything stated in the articles endorsed. These are merely articles which were found to be very interesting in understanding sleep medicine relative to UARS and apnea patients. The authors, journal, etc. is so that you can locate the article by other means if the link no longer works. You can often get these articles free at your local university medical library by using a terminal in the library.
Also, using some of the authors names may be useful in finding other articles with Google.
1. Paper on the evaluation of EEG signals during sleep. https://advancedbrainmonitoring.app.box ... m80xdhyw78
Elsevier Press, online article “Scoring Accuracy of automated sleep staging from a bipolar electroocular recording compared to manual scoring by multiple raters,” “Sleep Medicine,” Carl Stepnowsky, Daniel Levendowski, Djordje Popovic, Indu Ayappa, David M. Rapoport. (2013).
2. “Relative Occurance of Flow Limitation and Snoring During Continuous Positive Airway Pressure Titration,” CHEST, Sept. 1998, Indu Ayappa, Robert G. Norman, Jean-Jacques Hosselet, Roger A. Gruenke, Joyce A. Walsleben, David M. Rapoport. What this article shows is that snoring and UARS aren’t very well related.
3. “Upper Airway Resistance Syndrome,” CHEST, July 1, 2011, Olukayode Ogunrinde, Herbert J. Yue, Christian Guilleminault. Very good introduction to UARS. http://69.36.35.38/accp/pccsu/upper-air ... e?page=0,3
4. “Clinical Guidelines for the Manual Titration of Positive Airway Pressure in Patients with Obstructive Sleep Apnea,” Positive Airway Titration Task Force of the American Academy of Sleep Medicine, (Clete A. Kushida, Alejandro Chediak, Richard B. Berry, Lee K. Brown, David Gozel, Conrad Iber, Sairam Parthasarathy, Stuart F. Quan, James A. Rowley) Journal of Clinical Sleep Medicine, Vol. 4 No. 2, 2008. http://www.aasmnet.org/resources/clinic ... 040210.pdf
5.
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