Can You Train Your Doc To Learn New Ways

& learn the creative techniques originated on this forum that make sleep apnea therapy actually succeed.

I'm experiencing my second go around with sleep therapy treatment. In 2000, a sleep study & titration revealed that I had 99 apnea and hypopneas per hour of sleep. My CPAP unit had the decibel level of a John Deere Tractor & I had mask problems, the bridge of my nose and sleep apnea masks were not compatable. All leaked a steady stream of air into my eyes. Neither my internist or the DME had suggestions to reduce the noise and get a better mask fit, & I had UPPP surgery.

In December 2008, after increasing bouts of fatigue, my doctor orered a sleep study. The apneas were reduced by half, but I needed CPAP therapy again. I got my equipment, the ResMed 8 Elite ll, was quiet, but the masks leaked as they did in 2000.

I checked the internet for information on sleep apnea. The top of the list was Cpaptalk.com., where I found answers for my problems. I discovered data capable machines, are a must and the ResMed had a LCD readout giving figures regarding Leaks, AHi, Ai, and Hi. By studying posts, Our Wisdom, everything on the forum, I learned what they were, & kept an ongoing log. At one point I developed problems, Rested Gal & Kteague gave me advice that worked, & using R.G.'s tights I could secure my mask.

I decided to see if my sleep doc was open to creative solutions to treat sleep apnea. I had already tried the DME, they shot down the new mask innovations as "garbage from Cpaptalk.com." I took a complete log of seven weeks of dates, stats, etc. to my doc. He told me getting that kind of effort from a patient, made his day. I had included a mark by some of the dates, indicating significantly lower leak rates. He asked why, I told him I was clausterphobic & was trying to work up to a full face mask, and a friend (Rooster, that's you) told me how I could do it. I asked him if he had heard of mouth taping to reduce/prevent mouth leaks- he hadn't. I had a 2 inch roll of painter's tape,and a sample mask (including Rooster's tabs) I slapped it on to demonstrate if I needed a quick release, all I had to do was lower my jaw firmly, and the tape released. I showed him some of R.Gal's (and others) innovations to mask's, in addition to a copy of Rested Gal's pantyhose fix.

I told him I had discovered it all on Cpaptalk.com. He became aware of the site at a Meeting of Sleep Doctors and he frequently gave prescriptions to CPAP.com. He said none of his patients had mentioned mouth taping or other fixes, but if all of his patients were creative, he would had more continue therapy.

Anyone interested in giving it a try? Perhaps we could spread the word.

IF one is fortunate enough to encounter such an open-minded sleep doctor and one is tactful and diplomatic in their approach it makes for an ideal CPAP therapy team: doctor and patient working in unison and respecting each others's opinions and experience. You've done a good job and have a great sleep doctor!!

Slinky, congrats from you rates high in my book, and I was diplomatic, very diplomatic.

Jan

Well, OBVIOUSLY, your handled things JUST RIGHT!!! Good on you! I wish I had YOUR tact and diplomacy. I'm about as tactful and graceful as a three legged elephant in a china shop w/a mouse up my trunk.

Slinky wrote: . . . I wish I had YOUR tact and diplomacy. I'm about as tactful and graceful as a three legged elephant in a china shop w/a mouse up my trunk.

Well, Slinky, seems to me you admirably always treat everyone in the forums with utmost tact and diplomacy, so maybe the trick would be for you to invite your doctors to join this forum so you can send them graceful PMs instead of duking it out face-to-face!

SaltLakeJan wrote:Anyone interested in giving it a try? Perhaps we could spread the word.

I think it is painfully obvious that the OSA therapy industry,
does not want patients in charge of their own therapy.
They want you coming back for follow-up copays,
mask fittings at the DME, and then, when it isn't working,
"Lets do another sleep study." .....and go through the entire above process,
again. It's good for business, and that is really the driving force.

My doc sent me for a sleep study, simply because he was out of ideas.
I didn't fit the OSA profile, but lets try it anyway.
Now, he is different, in that once I got educated,
he was more than willing to write a RX for whatever I wanted.

Sadly, after my physical a month ago, I think he did that because
he doesn't know that much about cpap......so it was fine w/him,
for me to take charge and leave him alone.
Whatever, I have my life back.......works very well for me.

SLJ, it's a darn good thought, though.

Way too late for me. I could barely stand to be in the same room with my sleep doc and only had one more meeting with him after I got my prescription. I've often thought over the ensuing years (after being on this forum) that I'd like to see just how much he DID know about sleep apnea, but I sure didn't want to have to PAY HIM to find out or to "educate" him.
He was another one who didn't have much faith in the reporting capabilities of the data-capable machines and software.
In hindsight, there were other things that he and my PCP/GP missed in this whole process (that I figured out on my own).

Den

Hi Carbonman

You are the bike riding, poetry writing man. Way to go.

My Sleep Doc is a good guy - he appeared genuinely interested in a patient who (like you) was self-educating. I think you trained your doctor - in a different way. You won.

I replied to Slinky that I had been diplomatic when I had talked with the doc. I could be diplomatic, and a few other terms, but the DME (I have dealt with) would still reject any situation where they didn't consider themselves in control. I presume some DME's train their therapists to use fear tactics? Another way of looking at it, is that they fear losing business when patients take control. The local stores have a place, when you find a good one.

Jan

Hi Den,
The sleep Dr. was youngish, maybe that made a difference. He doesn't hang on to his patients either. I have a repeat overnightr oximetry in four weeks. If everything is ok, he will refer me back to my regular Dr.

The sleep Dr. I had in 2000, was so remote, I could scarely see him in his ivory tower. And similar to your feelings, I resented my insurance paying his high fee,. He was too bored to even try to help me.

Because your sleep Dr failed you, the members using this forum have benefited from your self-education, you willingly share what you have learned.. Thanks Den.
Jan

...using R.G.'s tights I could secure my mask.

You did?

One of these days, she'll have a monogrammed line of straps, and forum user's everywhere will grumble at the exorbitant price of those RG monogramed tigths, when you could get a much cheaper version from Taiwan... or Paris.

Or maybe, as one of these days, the English laguage will be enriched by a new term for a simple, creative, incredibly helpful solution: "That's a typical RG solution" ... complementary to untying the Gordian knot, there will be tying the RG one.... tight straps, hooks and scrunchies mandatory for the latter.

O.

ozij wrote:. . . Or maybe, as one of these days, the English laguage will be enriched by a new term for a simple, creative, incredibly helpful solution: "That's a typical RG solution" ... complementary to untying the Gordian knot, there will be tying the RG one.... tight straps, hooks and scrunchies mandatory for the latter.

O.

I LIKE it! I propose that the verb "RG" take the place of the verb "MacGyver" in American English:

"MacGyver employs his resourcefulness and his knowledge of chemistry, physics, technology, and outdoorsmanship to resolve what are often life-or-death crises. He spontaneously creates inventions from simple items to solve these problems. These inventions became synonymous with the character and were called MacGyverisms by fans. MacGyverisms became a distinct motif of the series. MacGyver was unlike secret agents in other television series and films because, instead of relying on high-tech weapons and tools, he carried only a Swiss Army knife and duct tape. The spontaneous inventions that have come to be nicknamed MacGyverisms even led to the verb, 'to MacGyver.' -- http://en.wikipedia.org/wiki/MacGyver

Maybe one day the Wikipedia will read: "RG employs her resourcefulness and her knowledge of CPAP, physics, technology, and ladies clothing to resolve the life-or-death crises of bad maskmanship."

Wulfman wrote:In hindsight, there were other things that he and my PCP/GP missed in this whole process (that I figured out on my own).

Aaaargh! (there, I feel a little better now).

The technique of deliberately keeping us ignorant wouldn't be so bad, if they really did take the time and energy to make sure we got everything we needed.

For an unrelated reason, I was hospitalized for a couple of days a little over a year ago. A week after getting out, my primary care doctor hadn't heard a word from the hospital. I went back to him about four months later, and he still hadn't heard anything. But at that visit I talked to him about continued problems with sleeping, and cognitive impairment, and he referred me to a sleep doctor (I had been mentioning sleep problems to him for at least 3 years, and his recommendation was that I should take a walk after having lunch).

That's fine, and everything has gone well. But I finally got the records from the hospital (after asking, twice) and in the report, it had been noted that I had been observed having apneaic events, and that I should be referred to a sleep specialist. The problem is, nobody at the hospital told me. They also didn't send the report to my doctor. Nobody knew! It was about 5 months from the hospital stay until I was referred to a sleep doctor, during which time I had no idea that I had OSA! (I would scream it now, if I could).

So, getting this report is the last straw for me. From here on out, I am not settling for not knowing what was going on. I've already noticed, on visits to both the sleep specialist, and an ENT surgeon (the sleep specialist referred me to him), that neither wants to spend more than 4 or 5 minutes with me. So, I have lists of questions, and I don't let up until they are done. They give me short answers trying to move things along, but no dice. I wouldn't be acting this way if they hadn't have forced me into it. The primary care doctor complicit in all this? He's retired now, and I'm seeing someone else that only seems to like 90 second appointments (that will have to change).

Guy

GuyK wrote: ... The technique of deliberately keeping us ignorant wouldn't be so bad, if they really did take the time and energy to make sure we got everything we needed. ...

And THE ABOVE is exactly why I so DETEST the sleep medicine profession as an entity!!! We don't need the d*mn sleep doctor royalty if they or the sleep lab would provide an experienced, knowledgeable professional of some sort to explain our studies, answer our questions, help w/therapy problems and intercede when needed w/either the sleep doctor or the DME supplier!!!

Ozij and jnk
It is plain to see you both recognize genius when you encounter it. Perhaps the following scenario will come true before we realize it.

March 1, 2009 National news reporters are aware there is a "buzz" going around that new innovative products will soon be released. The type of merchandise is rumored to be High Fashion, yet it is also connected to the field of medicine.

Fast forward to May 1, 2009. RG Industries has broken the band of silence. They have released a complete line of RG creations to a welcoming public. They have succeeded in filling a void in both the fashion and medical industries. At last women can adorn their sleep apnea masks with vivid colored bands, or a great variety of prints including leopard skin or harlequin. There is apparently no end to R.G's ingeunity. She also released a line of mouth taping kits. They are shaped like a woman's enhanced lips; they have a full variety of colors ranging from Demure Pink to Raging Red...

Hundreds of thousands of women in USA have sleep apnea, & because of the high projected sales volume of these products, various stores have been competing to carry to sell them. RG industries has turned down Department Stores, and Medical Equipment DME's. RG products will be sold in exclusively in intimate apparel shops.
Jan

crazy people....I'm on a message board with crazy people...