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[Treatment] Would you ever want other treatment options for OSA? Share your story!
#1
Would you ever want other treatment options for OSA? Share your story!
Hi all! I'm a doctor and part of a Stanford team studying OSA focused on coming up with future solutions and treatments that patients would actually want. The more we've studied and dug through the data, the more questions we have. At the end of the day though, you know your body and the effects of sleep apnea better than anyone else so with that in mind I wanted to hear your story and was wondering a few things. 

Since it's so hard and a painful process to get a diagnosis what finally motivated you to seek treatment for OSA and how were you diagnosed? Was there a specific symptom that really impacted your life and did CPAP, an oral appliance or surgery treat it? Also for anyone who can't use CPAP or oral devices what is it about the treatment that doesn't work for you? 


Would you rather have a one-time surgical procedure for your OSA or use something that you wear every night? 


Thanks to anyone willing to share anything about your story and how things are working for you. We're really trying to understand what truly matters to the community instead of letting a group of engineers and doctors make up solutions. 


TL;DR What do you love or hate about your apnea treatment, does it work and what would make you seek a surgical solution?
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#2
RE: Would you ever want other treatment options for OSA? Share your story!
For me, in 2014 I had gotten very sick and the various symptoms seemed to point to a heart issue. Included was family history of heart problems such as CHF, high blood pressure, heart attacks. So I had extensive cardiac workups done, all of which concluded no discovered issues. My PCP at that time sent me over to a pulmonary doctor to get breathing and sleeping studied. I had a sleep study and titration for CPAP with a high AHI, but it was looked at generically and not specifically that I had 3/4 or more were flagged as Central in nature. I lost 100 pounds of weight after CPAP became a disaster with poor doctor support and not looking at the whole sleep study to treat all that was revealed.

I just mentioned I lost weight. That process included approval to do a bariatric sleeve surgery. This took up all of 2016. I did not get an apnea diagnosis until mid 2015, and failing CPAP compliance then as well. I had an ENT do an initial consult on possible surgeries. There were none that made sense to consider. Early 2017 I revisited the CPAP route with the same sleep/pulmonary doctor. I had a new sleep study done with BPAP in mind. It created a BPAP script, but it was instantly a failure. I had just joined Apnea Board, and members here pointed out my CA was 124 to 24 OA. The doctor's answer was BPAP. One week later, I had an urgent visit with the pulmonary nurse and a different doctor, as my doctor was on a vacation. I asked if we were going to consider ASV. She did ask why I wasn't on it already, and that started an ASV acquirement path of 7 or so months. Now, I'm onto a new sleep study to prove I need NIV, as I have COPD and Mixed Apnea.

Anyway, are there surgeries I think I should pursue or should have pursued? None comes to mind that would eliminate a PAP or NIV. Do I think surgeries help apnea patients? Sometimes maybe, but in almost all the ones that comment here on Apnea Board are that surgery helped some but they still need a PAP of some sort. I'm not medically trained at all, but it seems that surgeries such as these available are part of an answer to some apnea patients. It does still sound like CPAP devices are better suited to provide better and more consistent positive results. Feedback I hear seems to indicate only those with very mild apnea events will benefit from surgery alone. All others will still need a PAP.

What do I like/dislike? I like the results of sleeping better and feeling more energy. I dislike how almost every DME are money grabbing crooks, only interested in the dollar. I dislike the way masks are sold, not allowing trials to see what fits best, leaks the least (before COVID this was an issue). I also dislike that most sleep doctors are pushed to respond to patients giving cookie cutter responses and issuance of CPAP for everyone. We each are individuals and my apnea is not identical to anyone else's needs.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Would you ever want other treatment options for OSA? Share your story!
(10-02-2020, 12:27 PM)DocHansen Wrote: Hi all! I'm a doctor and part of a Stanford team studying OSA focused on coming up with future solutions and treatments that patients would actually want. The more we've studied and dug through the data, the more questions we have. At the end of the day though, you know your body and the effects of sleep apnea better than anyone else so with that in mind I wanted to hear your story and was wondering a few things. 
Since this is your first post, I would appreciate a little more information...
Do you have a link to the disclosure of your study? Who is funding the study? Will it be a meta-study, anecdotal, or data-driven?
Sorry to be inquisitive, but you are asking people to provide information that can be aggregated and identified.
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#4
RE: Would you ever want other treatment options for OSA? Share your story!
Hi! Thanks for the information, happy to clarify! We're part of the Stanford Biodesign Fellowship focused on finding innovative solutions focused on patient needs. Not part of a company or a formal study. 

Unable to post a link due to the new account status but you can google Stanford Biodesign Innovation Fellowship for our background. 

Our goal is to do a deep dive into how patients are affected by OSA in an effort to reach the patients that can't tolerate CPAP, BIPAP or oral devices.
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#5
RE: Would you ever want other treatment options for OSA? Share your story!
Many Thanks.

Here is the link to the basic program ... https://biodesign.stanford.edu/programs/...ships.html
Here are the fellows... https://biodesign.stanford.edu/our-impac...ty_fellows

Steve
"The object in life is not to be on the side of the majority, but to escape finding oneself in the ranks of the insane." -- Marcus Aurelius
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#6
RE: Would you ever want other treatment options for OSA? Share your story!
xxx
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#7
RE: Would you ever want other treatment options for OSA? Share your story!
(10-02-2020, 12:27 PM)DocHansen Wrote: Hi all! I'm a doctor and part of a Stanford team studying OSA focused on coming up with future solutions and treatments that patients would actually want. The more we've studied and dug through the data, the more questions we have.

The real problem is with the medical providers. They are largely unaware of the vast data capabilities of modern CPAP machines, how to look at that data, but most importantly how to use that data to make adjustments to the machine to better treat the patients.

If you really are interested in future solutions, then addressing this problem will, in my opinion, remedy the largest obstacle to successful treatment of OSA and help the largest number of patients. Namely, the well-documented lack of compliance. Patients get frustrated with the doctors and the DME's who are not looking at their data and making evidence-based recommendations on pressure and other CPAP machine settings. So the CPAP machine sits in the closet, and the patient is left untreated.

On the other hand, if your interest is in exploring surgical alternatives to CPAP therapy, then please tell us that. It will place us in a position to be of greater help to you. Most of us have been frustrated by the medical care providers. Here's just one example. A patient is titrated at a certain pressure during an overnight sleep study. The doctor is then convinced that that is the correct CPAP pressure for that patient. But the CPAP machine they've since been using has lots of data that can indicate that the titrated pressure is not the best pressure to treat that patient. Why? Because the overnight sleep study collects one night's worth of data while the patient tries to sleep in unfamiliar surroundings. On the other hand, the CPAP machine collects many night's worth of data while the patient is sleeping in the familiar surroundings of their own bedroom. Most doctors don't even know how to look at the detailed data collected by the CPAP machine, let alone how to use it to treat the patient.
Sleepster
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: Would you ever want other treatment options for OSA? Share your story!
This is excellent and very helpful feedback and advice! Thank you so very much! As part of our process we haven't decided on surgical devices vs better CPAP machines but are currently really trying to understand the challenges that patients face and allow that to guide further research and device development. Understanding what is most challenging about having OSA and what you feel should change/your own thoughts about what could be better are the most important contributions!

Thanks again this is wonderful!
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#9
RE: Would you ever want other treatment options for OSA? Share your story!
The single biggest help would be some kind of forum, such as AB here, that is available to patients every day, to ask questions and get suggestions to optimize their therapy.  This info would be a part of the info given with any and all device purchases.  That staff should be able to tell from the charts that the patient is tucking their chin and know that no pressure will resolve that issue. Software such as OSCAR to be provided with the purchase. The trick is how to get such an organization to legally be able to change the settings.  

The biggest issue is that getting a CPAP is not a get-it and forget-it solution for a lot of patients.  They need a lot of hand-holding.  

Devices,  Make them upgradeable.  Make BiLevel the default entry instead of CPAP, they tend to be more comfortable for more people which leads to better compliance.
Improve, no implement the AI such that they are truly set and forget and automatically adjust to both common and uncommon situations.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: Would you ever want other treatment options for OSA? Share your story!
While requesting this type of information from a forum population can offer a wide range for possible discrete variables, it doesn't do much to book-end the range of experiences, limits, and numbers affected inside of the range of variables for any one variable.  I'm sure that is understood, but just in case, we get a large number here complaining that completed surgical interventions/remediation have done little to help.  Hence, their appearances here looking for an alternative when pretty much all else has failed for them.  What we never see is the perhaps much greater numbers submitting to procedures that ARE successful and that help to obviate having to use PAP therapies of any kinds.

In my case, a lifelong runner, I was nearing the end of a typical 10km noon-day run when I felt the energy sap away from my legs and I became breathless.  Long story short, and upon a second confirmatory run to the ER about eight weeks later, I learned I have paroxysmal AFib.  I had the whole spectrum of tests, MIBI, echo, ultrasound, but it wasn't until I had a polysomnography as a last ditch effort to nail it that I found I had severe apnea.  I started on straight CPAP immediately, and have been extremely fortunate to have had a very good experience to this point.  On Metropolol-t, Apixaban, and a statin, as one would expect for an aging male who had put on a few pounds.  Since January, on Low Carb-Higher Fat eating regimen and lost 22 pounds over about 12 weeks.  I'm short, so that's a bunch of weight.

One possibly important item, and I'm sure it has been on your radar generally as a possible precursor to obstructive sleep apnea: I have a pretty badly deviated septum incurred during a murderball game in high school 55 years ago.  25 years ago, upon dealing with a bad sinus infection, my military physician said I should have it fixed because things would continue to get worse for me.  Turns out, pretty sure, that he was right.  I still have the deviated septum, and if I'm representative at all of aged men, we often awaken with at least one nostril lining swollen shut nearer the morning.  At least I do, and that may have been a large part of my problem.  I still experience this, and awaken with a start tearing off my nasal cushion about every other month.  Not pleasant.

I hope that offers you something useful.

[Edit -added] I read with dismay of my American friends having all kinds of difficulty getting access, whether to help, information, or to ongoing assessment and guidance. This does not appear to be such a great problem for my fellow Canucks. Really, it's too bad if my impression of the quality of care is so poor in so many instances south of the border.
Serial Tapist
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