Guide to dealing with your sleep doctor and CPAP acquisition

[sleepy1235]

I took some of my earlier posts and things I learned on this forum and put it all together. I have this as a WORD document which I will update. I have an old friend with apnea and I have been going over with him how things work. I have gotten privately some good inputs when I have posted parts of the following paper.

I think that unless we start making demands things won't get better.


SLEEP RECOMMENDATIONS (10/4/2014 Version 1)

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.

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.

[49er]

I think that unless we start making demands things won't get better.

First of all Sleepy1235, I thank you profusely for the list of questions. In preparation for my upcoming Tuesday appointment with a sleep doctor I have seen previously, I will look them over and decide which ones I want to ask of her.

Not to come across as a "yes but" type of person but how do you make these types of demands when there is no financial incentive for them to do do. For example, the sleep doctor I am going to see works with several other doctors and they have six different office locations throughout my area. Obviously, they aren't hurting and if people like me were to make demands and leave the practice, they would find ready replacement patients in a heartbeat.

I am just brainstorming here and talking off the tip of my tongue so keep that in mind. But would there possibly be a way to let doctor know that if they started treating patients better and really addressed the issues that you raised, that we would be happy to give them positive publicity on this site or on the site of the proposed apnea association that is being discussed in another thread?

I know that sounds contrary to what I just said but I don't see it that way. Positive publicity is a more motivating force in my opinion to do well than disgruntled patients who threaten to leave the practice if they aren't treated very well since no one likes to deal with patients with bad attitudes even if they have every right to be upset.

If there is something I haven't considered, please let me know as I love reading your posts and your ideas.

Thanks!

49er

[sleepy1235]

Regarding 49er's comments.

Every group that is attempting to better its situation faces members of its own group who identify with the opposition and are opposed to the group's efforts to better their situation.

Despite the comments such as "thank you profusely for the list of questions" etc. the reply of 49er is a fundamental attack on my posting regardless whether the poster is self-conscious of that or not.

Basically it is a complaint that we shouldn't make demands of authority figures, in this case doctors. It attempts to stigmatize apnea patients who are badly treated and seek more accountable medicine. They are labeled as "patients with bad attitudes."

In particular I have a response to this disturbing statement:

"Positive publicity is a more motivating force in my opinion to do well than disgruntled patients who threaten to leave the practice if they aren't treated very well since no one likes to deal with patients with bad attitudes even if they have every right to be upset."

Patients who aren't being treated very well should not threaten to leave, they should leave and get a better doctor. That actually is the experience of many people in this forum. They didn't threaten, they left, and they got better treatment from a better doctor.

Also, patients who are being treated badly and don't accept bad treatment don't have "bad attitudes," they have bad treatment. Your posting stigmatizes apnea patients who are complaining about their bad treatment.

My whole posting is misrepresented by 49er as being a guide to confronting the doctor. It is about making informed choices by asking the right questions and avoiding a bad situation in the first place rather than being uninformed and then making a bad choice and then having to rectify it.

There are, especially in large cities, many sleep doctors and sleep facilities and there are choices and being informed means you have a better opportunity to make choices. Of course you won't be informed and have the information to make a informed choice unless you ask questions and know what to ask.

For example in one study I refer to the report was that 22% of certified sleep centers didn't have a written protocol. The paper I referred to had a published protocol. Wouldn't it be better to go to one of other 78% of the sleep centers with a written protocol rather than one which didn't have a protocol.

Wouldn't it be even better to go to a center which had a valid protocol? What good is "positive publicity" going to do you if you have a poor or incompetent sleep study?

if you had an appointment with your sleep doctor wouldn't you want to know that he or she is familiar with UARS and the sleep study would make sure that was taken into account. How would you know whether the doctor is going to take it into account unless you ask?

Why be a "disgruntled patient" with a "bad attitude" when with the right questions you can have a good doctor and a positive outcome?

How often do we see postings about apnea sufferers that suffered a bad doctor only after a few or many months in until they learn enough about apnea such that they realize they aren't being treated properly?

Why have a bad experience at a sleep center when you can avoid it by asking to visit before hand? What is the good of people in this forum posting complaints about their bad sleep center experiences unless we learn from them and come up with a plan for others to avoid them?

If even a few patients started to turn down sleep centers because they weren't acceptable, I bet it would have a big impact.

Why end up with a brick CPAP because you didn't know any better, when instead your first machine could be a data recording machine?

If in general if doctors start getting more informed questions and face patients with higher expectations I think there will be some impact on apnea medical practice. Holding people accountable is the first step to better performance.

If apnea patients upfront are better informed and know what questions to ask they can make better choices regarding doctors, sleep centers, equipment and make better choices to have better outcomes.

Even if you are stuck with a poor doctor, being informed will allow you to challenge some decisions and ask for the right treatment. It doesn't necessarily have to be confrontational. Some doctors might be merely uniformed and your provision of information would help them. In other cases they probably have no opposition to your request, you just needed to ask. For example to visit the sleep center before hand.

But if it came to a situation where I had to be demanding, I had rather have a "bad attitude" and "good therapy" than a good attitude and bad therapy. Besides you probably have to wait months to see your doctor get a chance to have a bad attitude.

Perhaps some sleep doctor somewhere will be upset with these questions, but I really won't care as long as apnea patients are getting better doctors, better sleep studies, and better equipment.

Also, no more private messages 49er.

[blue123]

Today, we have accurate and convenient screening and in-home testing available. In addition, sleep apnea can be very successfully treated by oral appliance therapy, and in severe cases, CPAP or surgery.

[RicaLynn]

Despite the comments such as "thank you profusely for the list of questions" etc. the reply of 49er is a fundamental attack on my posting regardless whether the poster is self-conscious of that or not.

*scratches head* So, just so I'm clear on this, you're saying that a civilly presented dissenting OPINION is an attack? Ok, gotcha. As long as I know I can't win...

[bwexler]

49er, I delt briefly with a dentist last year that you just described.
We had a discussion about treatment and "extras". When he explained he couldn't keep his doors open on what the insurance would pay, and had to pad the bill with items not covered by the insurance, we left. The next day while we were discussing our options we got a letter from him telling us we were fired.
We said great saves us the hassle of telling the insurance company we want to fire him.

[Drowsy Dancer]

In the "CPAP acquisition" section of the guide have you considered adding references to direct purchase, once prescription is in hand, from online vendors, or gray market purchases, e.g. Craigslist?

[ems]

Despite the comments such as "thank you profusely for the list of questions" etc. the reply of 49er is a fundamental attack on my posting regardless whether the poster is self-conscious of that or not.

*scratches head* So, just so I'm clear on this, you're saying that a civilly presented dissenting OPINION is an attack? Ok, gotcha. As long as I know I can't win...

+100

[zoocrewphoto]

Today, we have accurate and convenient screening and in-home testing available. In addition, sleep apnea can be very successfully treated by oral appliance therapy, and in severe cases, CPAP or surgery.

Welcome to the group. Considering that most surgeries and oral appliances consider success to be a reduction on ahi of 50%, I will keep my cpap, thanks. My untreated ahi is 79, and an ahi of 40 would still leave me in the severe category. And the side effects of the surgery sound horrid. And the oral devices don't sound much better.

Not sure if you are a new user, or if you are selling these devices, but cpap is the gold standard. It can treat severe cases and get them to an ahi under 5 (mine us usually under 1). And most side effects of cpap can be corrected with adjustments.

[49er]

zoocrewphoto,

You might want to look at the link in my signature profile regarding dental devices as according this research, it is not quite accurate to state that generally, oral appliances reduce the AHI rate by 50%. Generally, they work best for people with mild to moderate apnea and that adjustable appliances have a better success rate than fixed appliances in getting the AHI below 5. It is mostly the severe ranges that don't work as well although I noticed there were a few of them that had at least a 50% chance of getting the AHI below 5.

Regarding surgery, the issue is if you have tried pap therapy, oral appliance therapy to no avail and your AHI needs to be treated, in my opinion, it is better to pick the best possible surgical option with the best surgeon as even a low success rate (which is still debatable in my opinion) is better than doing nothing at all. Personally, if I was at the point of choosing surgery, I would elect to to have a sleep endoscopy so I could see exactly where the blockage was. Apparently, some of the low success rates (not all) may be due to picking the wrong surgery or not addressing all the blockages.

By the way, I am not sure why you are comparing the side effects of surgery to a dental appliance although OA appliance therapy is definitely not side effect free. But in no way shape or form does it compare to what people going through surgery experience.

Finally, another option for severe apnea is combination oral appliance and pap therapy. The idea is that perhaps because folks aren't tolerating a high pressure, using oral appliance therapy can lead to a lower pressure with more comfort and thus, success. Not sure it would really work out that way but I did want to throw it out there for consideration.

49er

Today, we have accurate and convenient screening and in-home testing available. In addition, sleep apnea can be very successfully treated by oral appliance therapy, and in severe cases, CPAP or surgery.

Welcome to the group. Considering that most surgeries and oral appliances consider success to be a reduction on ahi of 50%, I will keep my cpap, thanks. My untreated ahi is 79, and an ahi of 40 would still leave me in the severe category. And the side effects of the surgery sound horrid. And the oral devices don't sound much better.

Not sure if you are a new user, or if you are selling these devices, but cpap is the gold standard. It can treat severe cases and get them to an ahi under 5 (mine us usually under 1). And most side effects of cpap can be corrected with adjustments.

[zoocrewphoto]

zoocrewphoto,

You might want to look at the link in my signature profile regarding dental devices as according this research, it is not quite accurate to state that generally, oral appliances reduce the AHI rate by 50%. Generally, they work best for people with mild to moderate apnea and that adjustable appliances have a better success rate than fixed appliances in getting the AHI below 5. It is mostly the severe ranges that don't work as well although I noticed there were a few of them that had at least a 50% chance of getting the AHI below 5.

Perhaps was too simplistic, but bascally, the surgeons and dentists selling these use a completely different definitin of success amd that is extremely misleading to newcomers who usually hear about cpap, decide they want to avoid cpap, and then lookat alternatives. After first hearing success defined as ahi less than 5, then it is easy for them to look at a success rate by a surgeon and assume it means ahi less than 5. I cannot comprehend why so many peope with severe sleep apnea would be directed to these alternatives when it is pretty clear that "succes" would still leave thm severe.

Regarding surgery, the issue is if you have tried pap therapy, oral appliance therapy to no avail and your AHI needs to be treated, in my opinion, it is better to pick the best possible surgical option with the best surgeon as even a low success rate (which is still debatable in my opinion) is better than doing nothing at all. Personally, if I was at the point of choosing surgery, I would elect to to have a sleep endoscopy so I could see exactly where the blockage was. Apparently, some of the low success rates (not all) may be due to picking the wrong surgery or not addressing all the blockages.

I get the impressin that most people looking at alternatives are trying to avoid cpap.The have either not tried cpap, or failed quickly, and never really got useful help to make it successful. I truly believe that cpap should be tried first with a reasonable amount of time, and real help. As in, finding the right mask, machine with data that is being used.

By the way, I am not sure why you are comparing the side effects of surgery to a dental appliance although OA appliance therapy is definitely not side effect free. But in no way shape or form does it compare to what people going through surgery experience.

I said the side effects weren't much better. Long term jaw pain doesn't sound much better to me than surgery side effects. Both a cause permanent damage.

Finally, another option for severe apnea is combination oral appliance and pap therapy. The idea is that perhaps because folks aren't tolerating a high pressure, using oral appliance therapy can lead to a lower pressure with more comfort and thus, success. Not sure it would really work out that way but I did want to throw it out there for consideration.

49er

Completely agree. Anything that helps the cpap treatment work better without causing permanent damage is great. For some people, this works very well.

[49er]

Before I make my points, let me just stress that if someone wants to avoid cpap, there is nothing wrong with that as long as they are making a fully informed choice about what their alternatives are. And if they decided not to do anything, that is their right although hopefully, we would be able to encourage them not to do that.

I do agree there are many dentists who call themselves a sleep medicine dentist are clueless about what true success looks like. When I called one local office, their definition was that the person felt refreshed which could mean so many things.

At the same time, I did want to point out that if someone has tried to succeed with pap therapy in spite of their best efforts and the best they are able to do with a dental appliance is a 15 AHI and they sleep through the night unlike with the pap machine, that is still a major improvement. Dr. Luisi, the sleep medicine dentist from the other side, showed a study that people's risk with mild apnea regarding getting heart disease and other similar type issues isn't that much greater than for non apneacs. Of course, the quality of life might not be as great but sometimes, you have to simply pick the best option out of imperfect choices.

You're right, just like with dentists, there are many surgeons who give misleading statistics about success. So of course, newbies, who don't know any better, end up getting horrific treatments. But it still doesn't mean that this shouldn't be an option for some people as again, as long as they are fully informed about everything.

And so what if people are looking at alternatives are trying to avoid cpap? Is there something in the cpap code of ethics that prevents people from doing so? By the way, when I visited the the Talk About Sleep Board, many folks with dental devices who found them to work alot better than CPAP felt they had wasted alot of time trying to make it work to no avail and were upset they didn't look at dental devices sooner

Saying someone is trying to avoid cap sounds awfully judgmental even though I am sure that wasn't your intention. Why can't you just accept that everyone is different and what works for you what might not work for me and vice versa?

Where did you read that long term jaw pain is a major side effect of dental appliances? I read that it occurs in a minority of people and that it can be avoided with religious jaw exercises each morning.
Also, it can be an issue of poor dental appliance selection or perhaps it was made poorly which caused the person's pain.

Regarding combination therapy which you seem to be in favor of, how do you know wearing a dental appliance long term wouldn't also cause jaw pain? Using the cpap isn't going prevent that if that is a side effect long term for most people which I am not totally convinced of.

49er

PS - You might want to read the 9/27 comment by SleepDent at this link, http://www.apneasupport.org/post207721.html#p207721. He agrees with me that the devil is in the details vs. the concept of Oral Appliance therapy re: side effects. Unfortunately, finding a professional like this guy is easier said than done.

zoocrewphoto,

You might want to look at the link in my signature profile regarding dental devices as according this research, it is not quite accurate to state that generally, oral appliances reduce the AHI rate by 50%. Generally, they work best for people with mild to moderate apnea and that adjustable appliances have a better success rate than fixed appliances in getting the AHI below 5. It is mostly the severe ranges that don't work as well although I noticed there were a few of them that had at least a 50% chance of getting the AHI below 5.

Perhaps was too simplistic, but bascally, the surgeons and dentists selling these use a completely different definitin of success amd that is extremely misleading to newcomers who usually hear about cpap, decide they want to avoid cpap, and then lookat alternatives. After first hearing success defined as ahi less than 5, then it is easy for them to look at a success rate by a surgeon and assume it means ahi less than 5. I cannot comprehend why so many peope with severe sleep apnea would be directed to these alternatives when it is pretty clear that "succes" would still leave thm severe.

Regarding surgery, the issue is if you have tried pap therapy, oral appliance therapy to no avail and your AHI needs to be treated, in my opinion, it is better to pick the best possible surgical option with the best surgeon as even a low success rate (which is still debatable in my opinion) is better than doing nothing at all. Personally, if I was at the point of choosing surgery, I would elect to to have a sleep endoscopy so I could see exactly where the blockage was. Apparently, some of the low success rates (not all) may be due to picking the wrong surgery or not addressing all the blockages.

I get the impressin that most people looking at alternatives are trying to avoid cpap.The have either not tried cpap, or failed quickly, and never really got useful help to make it successful. I truly believe that cpap should be tried first with a reasonable amount of time, and real help. As in, finding the right mask, machine with data that is being used.

By the way, I am not sure why you are comparing the side effects of surgery to a dental appliance although OA appliance therapy is definitely not side effect free. But in no way shape or form does it compare to what people going through surgery experience.

I said the side effects weren't much better. Long term jaw pain doesn't sound much better to me than surgery side effects. Both a cause permanent damage.

Finally, another option for severe apnea is combination oral appliance and pap therapy. The idea is that perhaps because folks aren't tolerating a high pressure, using oral appliance therapy can lead to a lower pressure with more comfort and thus, success. Not sure it would really work out that way but I did want to throw it out there for consideration.

49er

Completely agree. Anything that helps the cpap treatment work better without causing permanent damage is great. For some people, this works very well.

[zoocrewphoto]

Saying someone is trying to avoid cap sounds awfully judgmental even though I am sure that wasn't your intention. Why can't you just accept that everyone is different and what works for you what might not work for me and vice versa?

Because most people CAN succeed with cpap if they try it with a good machine and good assistance. CPAP has a much better success rate, and can help even severe people get fully successful treatment.

I am not judging new people. I am judging the ignorant doctors and idiot DMEs who don't bother to help the new people get the right machine, the right mask, and the optimal settings to help them succeed. They are the main reason that people fail.

How can somebody make an informed decision to skip cpap and do permanent surgery if they don't even know they didn't get a good machine, and had incorrect settings? They are NOT informed because the doctor didn't bother to help properly.

I know you have trouble with this therapy. I know that some people really do struggle after a very determined try. But your case is not typical. Most people who have a full data machine and good help do find a success eventually. And we all know that we get a ton of newbies on a regular basis who want to quit, who are in denial about the seriousness of sleep apnea, and we do our best to educate and encourage them. I think it is dangerous to encourage newbies to look at the other options since it gives many of them an excuse to give up on cpap. They won't go back to it when the dental appliance or surgery fails. Or they assume it works since the y were told they were successful when they really weren't. That is NOT helping them.

Please do not assume that everybody who has trouble in the first week or month, even the first few months, is in the same situation as you. Many of them were never given any real information, and they don't even know it. We need to help them succeed rather than encourage them to quit and try something else.

[49er]

Zoocrew,

I am not assuming anything and as I think I have proven on this board, I definitely encourage newcomers to optimize their therapy, particularly when they haven't given it a chance. But if they are really hating therapy and it seems quite obvious from their posts that they are seriously thinking about ditching the pap machine come heck or high water, it would be irresponsible of me not to mention dental devices, particularly it means otherwise, they won't have any treatment at all. This is providing they have mild to moderate apnea since the chances are greater of success. Of course, I always add the necessary precautions.

Another issue you may be overlooking is that if the mild to moderate folks know that dental devices are a possible option, perhaps they will be less stressed about trying pap therapy knowing that they have a fallback choice. It make make a difference with their success. I do agree that people with severe apnea need to give cpap more time than someone with mild or moderate might since the success rates of dental appliances are not as great.

49er

Saying someone is trying to avoid cap sounds awfully judgmental even though I am sure that wasn't your intention. Why can't you just accept that everyone is different and what works for you what might not work for me and vice versa?

Because most people CAN succeed with cpap if they try it with a good machine and good assistance. CPAP has a much better success rate, and can help even severe people get fully successful treatment.

I am not judging new people. I am judging the ignorant doctors and idiot DMEs who don't bother to help the new people get the right machine, the right mask, and the optimal settings to help them succeed. They are the main reason that people fail.

How can somebody make an informed decision to skip cpap and do permanent surgery if they don't even know they didn't get a good machine, and had incorrect settings? They are NOT informed because the doctor didn't bother to help properly.

I know you have trouble with this therapy. I know that some people really do struggle after a very determined try. But your case is not typical. Most people who have a full data machine and good help do find a success eventually. And we all know that we get a ton of newbies on a regular basis who want to quit, who are in denial about the seriousness of sleep apnea, and we do our best to educate and encourage them. I think it is dangerous to encourage newbies to look at the other options since it gives many of them an excuse to give up on cpap. They won't go back to it when the dental appliance or surgery fails. Or they assume it works since the y were told they were successful when they really weren't. That is NOT helping them.

Please do not assume that everybody who has trouble in the first week or month, even the first few months, is in the same situation as you. Many of them were never given any real information, and they don't even know it. We need to help them succeed rather than encourage them to quit and try something else.

[Davidwnc]

Every group that is attempting to better its situation faces members of its own group who identify with the opposition and are opposed to the group's efforts to better their situation.

Pardon me, but could you please explain to me who 'the opposition' is? Perhaps then I will better understand your position.