AboutDave J. (Scoop0901) Expertise I can answer questions on sleep disorders, in general, and sleep apnea, specifically. I've been actively involved in providing direct support to individuals, family members, employers, and others on the topics of sleep and sleep disorders for more than six years, keep up-to-date on valid, peer-reviewed research, as well as treatment options.
I can answer general questions including, but not limited to polysomnography (PSG or sleep study) techniques; health issues associated with sleep apnea; compliance with a CPAP or BiPAP machine, mask selection and fitting; insurance coverage; ADA issues; and more, but cannot provide diagnosis over the internet.
Why can I answer only general questions? The question would be better asked why I will not answer specific questions. That's the easy part. Your health is unique, or, in redundant terms, "individually unique," meaning that while there's a lot of research that has been conducted in the world of sleep over the past few decades, there is none that can foretell any specific individual's future. What may hold true for your friend, for instance, may not be true for you. It's just like if both you and your best friend like to drive. You both want to own your own vehicles, having the freedom to move about a will, but your taste, your selection in vehicle is vastly different. For example, you may prefer an environmentally-friendly sub-compact car that gets 50 miles to the gallon, but your neighbor may prefer a H2 Hummer. The same holds true with health care issues. While one person may suffer issues X, Y, and Z, as fully supported by research, you may suffer issues D, T, and S, never experiencing anything the other person experienced.
Experience
As to my experience, let's start back on January 1, 2000, one of nine days I spent in an Intensive Care Unit (ICU) unit of a Northeast Philadelphia hospital. I was diagnosed with sleep apnea, along with a couple other sleep disorders, not to mention some very serious, very nasty health conditions related to many years of undiagnosed, therefore, untreated sleep disorders.
After somewhere around three months of fiddling with the equipment, adding a heated humidifier to the gear, and finding the right mask for me, I became 100 percent compliant with my BiPAP therapy. I have seemingly experienced what seems to be all the same, nay, all the classic problems everyone else who's ever used a CPAP, BiPAP, or other xPAP device has experienced, suffers. Things such as mask problems, humidification problems, among others.
I established a community education and support group, Awake in Philly, in Philadelphia, PA (USA), in May 2000, to help support and educate others about the true costs of sleep issues, including sleep disorders, sleep deprivation. We also work to educate the public, employers, and government and elected officials, as well as health care professionals about the dangers of these issues.
Since getting diagnosed, I've become a very vocal, very pro-active sleep activist, dedicated to helping others before they suffer the many woes that too often accompany untreated and undiagnosed sleep disorders and sleep deprivation.
In addition to working locally, I always think globally, yet act responsibly in all I do, yet have managed to extend the reach of my work nationally. I am involved with Awake In America, Inc., an all-volunteer national non-profit focused on sleep and sleep disorders. An all-volunteer organization is one where the people involved are committed to the efforts, and one in which no one is paid or compensated for their work with the organization, where all funds may be used for operations and actual work to fulfill the organization's missions. I know of no other non-profit corporation that can make that bold statement.
Awake In America was organized to assist others around the country to quickly and effectively launch support groups, but also to work on community awareness of sleep disorders, serve as an outreach source, among other issues. Awake In America also launched the only national xPAP Donation and Relief Program, which is designed to assist individuals without insurance or the financial means necessary, obtain equipment and supplies essential to treating diagnosed sleep apnea. We also have a national Sleep Study Relief Program, again, the first in the nation, and the only one of its kind in the nation.
Having spent more than 20 years as an investigative journalist and editor, I do careful, tedious research on all issues involving sleep and sleep disorders. I question everything in studies and reports, challenging findings, wanting to see if everything using strict scientific methods, uninfluenced by funding flowing from specific interest groups.
In the almost nine years of helping others, through Awake In Philly and Awake In America, as well as my personal blog on sleep, The Sleep Blog, I've done a tremendous amount of reading, much of which in the same books used to train sleep techs, as well as many of the same books that are on the shelves of many sleep specialists.
I've dealt with countless people, via email, instant messaging (IM), and on the phone, sometimes, basically doing the equivalent of providing a shoulder for them to lean or cry on. In the end, I offered ideas to help them overcome their challenges, and fortunately, I've been able to help a large majority of those people, but some required the hands-on, in-person approach of a physician or sleep specialist.
Question I was diagnosed with severe sleep apnea about 3 years ago and since then have tried various masks with no success. Full Face masks and nasal masks leave a very bad pressure sore on the bridge of my nose to the point that the skin is open and bleeding. Nasal Pillows cause the inside of my nose to be very dry and congested even with the humidifier that attatched to my BiPaP machine on it's highest setting and me using a nasal spray. Nasal Pillows also cause the corners of my nose to be very irritated and uncomfortable not to mention my lips very dry even if I use a chine strap.
My sleep doctor has tried them all and he says that we should try a full face mask again because that is what my pressure dictates however, again it causes severe, open wound pressure sores on the bridge of my nose. I have tried "mole skin" but it does not stick to any full face masks that I have tried so it is does not solve the problem. I also tried putting a band aid over the bridge of my nose but it does not stay in place and when it does it does not prevent the prseeure sore. Do you have any suggestions on a particular full face mask that I can use that will not leave pressure sores on the bridge of my nose or any other suggestions or tips on how I can solve this problem?
Thank you
Murphy
Answer Murphy:
Your doctor may have "tried" many of the masks on the market (I doubt he tried all of them), but did he wear each one of them long enough -- 10 days or more -- to get a good feel for each mask? That's the big question.
This is a common issue, and one of the two big issues involved in patient compliance. This is an important issue, and may be the critical factor in determining the success of a person’s compliance and future use of the CPAP.
Some folks on CPAP, some home healthcare companies, or even their employees/respiratory therapists, may try to tell you “this is the best mask on the market,” or “nobody likes that mask.” Don’t listen to the hogwash.
There is no such thing as “the best mask on the market,” in all honesty. You are not buying a grapefruit or luxury sedan. You are buying something that must conform to your unique facial structure, and be comfortable to you. The mask that fits you, feel comfortable -- over time, not just one night or for five minutes while you “try it on” to decide if that’s the mask you purchase -- and works for you is the “best mask” on the market for you. For some, they prefer nasal pillows. Others prefer full-face masks. Some people like nasal masks that have a gel cushion that rests against their forehead. Others prefer a mask that has as little footprint (or is it nose print in this case?) as possible, in terms of how much contact is has with your face. I am in the latter group and prefer the Respironics Simplicity.
When you talk with the home healthcare company/companies, be sure to ask if they will swap masks for you, say, within a week, if there’s a problem with the fit, irritation, discomfort, etc. Most home healthcare companies that at establishing a successful (and profitable) business relationship with you will swap the masks, if needed. Sure, there will be a point where they say, “Enough is enough!”, as each time they open a mask, they just sold it. Basically, once you’ve used the mask, they cannot sell it to another individual, so while they may be willing to work with you to find a mask, they cannot do it for forever. Generally, within three masks, at most, people find a mask they like and that works for them.
On the other hand, if they aren’t willing to work with you in finding a mask that will work for you, to ensure your compliance, which means that you use the machine each time you sleep for the entire time you sleep, there’s a problem. They should be concerned and focused on ensuring you are compliant with the xPAP therapy, and if not, helping you overcome the challenges you face. If they lose a few dollars on you getting you setup with the right mask for you, that’s called the cost of doing business. Perhaps it will take two “lost” masks to find the one that works best for you. In the future, when you order, you will likely order the same mask time and time again. It’s that repeat business, for masks, filters, tubing, and any other supplies, as well as the on-going rental fee they will receive for a set period of time from your insurance carrier that brings in the money.
My best suggestion to you, or anyone else -- and the same advice I use in treating my apnea -- is if the home healthcare company is unwilling to help, find a different provider.
Here is a listing of some of the manufacturers of masks that you may want to find their corporate site and check out the masks available:
* Respironics
* Fisher and Paykel
* ResMed
* Hans-Rudolph
* DeVilbiss / Sunrise Medical
* Nasalaire
* Puritan-Bennett / Mallinckrodt
If the home healthcare company says that a certain mask “is not covered” under your plan, I would laugh. For billing purposes, all masks on the market are covered under the same billing code. The reimbursement for each mask is the same. The truth may more likely be that the provider may not carry masks from a specific manufacturer or may opt to not buy specific masks.
I wrote a detailed article about this very topic, which may help you find the best mask for you -- and in the end, it may NOT be a full-face mask. I would argue with your doctor that your pressure "dictates" a full-face mask, as the inhalatory (the higher of the two) pressure is 28cm/H2O and I wear a Respironics Simplicity nasal mask, and have for over eight years. The article is posted at:
* http://bit.ly/Best-CPAP-mask
I hope this helps.
Cheers,
-dave
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| Dave Jackson * http://sleep.scoop0901.net * Phila., PA.
| "It is funny about life: if you refuse to accept anything but the very
|best you will very often get it." -W. Somerset Maugham
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DISCLAIMER: Any information shared in this email is not intended to replace medical advice, nor is any information to be is interpreted as an attempt to diagnose, treat, cure, or prevent any disease.
