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 read your post about the person who had UPPP and it was a disaster, had to have a tracheostomy, and then reconstructive surgery. Unfortunately, that's me too. I've been very unsuccessful in using the trach tube satisfactorily and the full face mask is just not cutting it anymore. I've also lost almost a hundred pounds without much change. Who did the reconstructive surgery for the person you know? I may want to consult with him/her.
Answer He actually had consults with several top docs in sleep here in the U.S., as well as two otolaryngologists and several other surgeons, including a plastic surgeon.
His situation was so serious by the time he began the consults that he had to have an emergency temporary trach prior to the surgeries.
I provided the names of several docs to him, but there were many involved in three states, four hospitals, and a few universities. In the end, because of his situation (small airway, big jaw, horrific damage from the UPPP and several follow-up procedures (aka "touchups"), that he had a few surgeons (I forget if it was two, three, or four actually in the O.R.), with each assigned a very specific role. One surgeon, based in California, did several consults with the full surgical team via conferencing several times.
I have no idea where you're located, but what you may want to do is look schedule an appointment at one of the major universities involved in sleep research. Penn, Harvard, Stanford are the biggies, but there are others. The University of Chicago has done research, as well as the University of Michigan. I'd have to dig into my archived files to pull bios on researchers and find their place of employment. You can do the same using Google.
As far as providing names, that's something I won't do, as it tends to represent a form of endorsement of a person's talent. Since I've never dealt with any of the doctors involved, as a patient, I wouldn't make that kind of recommendation. I will tell you that in the end, all the actual surgical work was done at the University of Pennsylvania.
When researching surgeons, please be sure to review their full qualifications, background with the specific procedures they are looking at doing, such as the MMA (Maxillo-Mandibular Advancement), and be as familiar with the surgical procedure as the surgeon will be. That way you can ask informed questions, as well as have a better idea of any concerns you may or should have, along with questions about short-term and long-term issues, etc. Remember, doctors will (should!) answer all your questions, fully, but sadly, many don't offer too much additional information unless solicited, including information that may cause you to have second thoughts. Some doctors don't even discuss or inform patients of possible or likely side effects when prescribing new medications, so a well-informed patient is his/her own best advocate.
I hope that 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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