Pillar+Tap II = No PAP

[meister]

It has been a long journey for me. I was diagnosed with Severe Central
Apnea with lots of Obstructive and Mixed Apnea to boot. My sister
died of Sleep Apnea, so I was somewhat highly motivated to do something
about my illness. If it had not been for SWS, Rested Gal and this forum, I would probably be dead today. So I started reading every post on this and
every other forum out there. I had severe depression, Erectile Dsyfunction,
tons of anxiety, and my cardiologist said I had damage to my Mitral
valves from Apnea. I suffered with all the usual problems with straps,
masks, hoses, etc. Even after months of trying lots of combinations
I could never get through a night without leaks. I struggled with DME
folks!! I bought my own machine! My Doctor put me on a VPAP III
with S/T mode at a pressure of 18/12 with a backup rate of 14. My
Dentist helped me with a Device called the SilentNite. It made a huge
difference which could be repeated demonstrated in nightly stats. I
bought my own Oximeter and did extensive tests. I struggled onward
starting out with very little sleep. I started to read more about Dental
devices, since my sister had UPPP surgery and it didn't save her. I
shelled out some money for the Pillar procedure. That seemed to
be a total waste of money, even two months later. So I switched to
the TAP II which gives me more jaw extension than the SilentNite was
capable of. Then I tossed the VPAP III and switched back to my PB420e.
I kept lowering the pressure as I noticed that it would rarely go above
the lower setting during the night. So after 4 months from the Pillar
procedure surgery (which my Sleep Doc said was scam), I just cranked
my TAP II out 22 turns and put the PAP in the closet. Apparently my
Pillar has finally kicked in, and in conjunction with the TAP II, there
is no more PAP in my life. No humidifier to screw around with. No
morning cleaning. No lugging around Distilled water. No strap cuts
on my neck, or red notch on my nose. No bloated gas to come
out for two hours in the morning. No hours reading forums looking
for how to wrap panty hose around my head for relief, I will miss
all of you.

[snork1]

Congratulations!
your story is suprisingly similar to mine.
I wish dental devices could replace CPAP for everyone.
I wish more people could TRY dental devices to see if they MIGHT work for them.
I feel like I got my life back when I switched from CPAP to TAP T!

My story skipped over Pillars, based on a consult by my ENT that also did a great job of getting my sinuses working.

But I did get a pulse ox on Ebay. I am not sure it would have been possible to do the transition safely without a pulse ox.

I just did a 2.5 week trip to Greece and it would have been doable, but a major pain with CPAP, with luggage lost, rooms with no outlets or one far away across the room, no distilled water available, unexpected stopovers when it took 2 days instead of one to get home again, with only a couple hours of sleep grabbed that would have been spent mainly setting up and tearing down CPAP.

My wife hated my snoring AND the noise of CPAP. I am back in the bedroom again NOW.

Yes, I can totally relate to your enthusiasm and excitement!

Congrats! We are amoung the lucky ones that can use a dental device successfully!

[Stryker5777]

Hey guys,

I am inspired by your success to continue on... I still struggle with sleeping but its refreshing to know that there are some out there that are beating this sleep apnea nightmare. Please consider staying on the board and offering your personal insights and knowledge, so that others may benefit as you guys have.

How was the ENT helpful to you guys? I've been considering going to see one for my chronic nasal congestion, after I've tried quite a few differnt things with very little success. I don't have insurance so I'm not sure if one could offer anything that I haven't tried already. However, maybe its worth a try tho. hmm. well, anyways....


I'm happy for you guys!!

Best wishes for your continued success,

Stryker5777

[ozij]

Meister -
I'm glad to hear you're doing so well! I find it fascinating that the two procedures can help with central apnea, as well as obstructive. Do you have any idea why or how?

Snork -
Congratulations!

Stick around guys - please.

O.

[Snoredog]

(cough)


hate to burst your bubble, but Dental devices only work if you have Mild OSA not Severe Central Sleep apnea.

Every PSG I've ever seen post Pillar shows the patient still snored, even those idots on TAS took a black marker and blocked those statements out on the PSG report so their scam wouldn't be discovered yet you guys took it hook, line and sinker.

Not this fish, but this is CPAPTALK, if you want to discuss snake oil treatments like Pillar take that crap back over to TAS where it belongs.

[rested gal]

I've joked with meister about this many times in the past, but I meant it... "You don't have Central Sleep Apnea, much less SEVERE Central Sleep Apnea!" LOL!! You've got Obstructive Sleep Apnea! With some centrals thown in. But not Central Sleep Apnea as a disorder. imho!!

I'm not an expert or anything even close to it about reading graphs. But from looking at data reports meister kindly shared with me many times, I couldn't see anything that made me think he had/has central sleep apnea. I don't know why his doctor told him that. It always looked primarily like obstructive sleep apnea to me from the 420E, VPAP III, and other machine reports I got to look at while he struggled with xpap treatment for so long. His struggle including mouth air leaks, trying to find a mask that would work yet allow him to sleep. All the cpap treatment related things, including other health issues, that can disrupt sleep.

I saw the difference in his overnight data with and without using the Silent Night dental device. He's seen the difference in his O2 sats by wisely using a recording pulse oximeter.

So, I'm not surprised that pillar + TAP works well for meister. And for quite a few people on the TAS board. Or that the TAP Titanium alone gives good treatment for snork1.

Dental devices and/or Pillar procedure to keep an obstructed airway open are not snake oil, imho, any more than blowing air into the throat is. PSG is definitely called for to prove any method or combo method of treatment is effective. But overnight recording pulse oximetry coupled with subjective results (how ya feel the next day) ain't the worst way to look at what works for an individual.

CPAP suits me fine, and I'm quite comfortable sleeping with mask and machine. I'm not looking for a different kind of treatment myself. But I sure am glad that for some people there are other effective ways of handling OSA treatment if need be.

Clickable LINKS to surgery, turbinates, Pillar, TAP experiences

[meister]

but not in Sleep Medicine

I had two $3000 sleep studies done by two different Doctors, but in
the same Sleep lab. That was their diagnosis! Of course, I thought
they were clueless and uncaring, but who are we to challenge Board
Certified Doctors who have extremely high ratings?? What always
puzzled me, with most discussions with Doctors, is that I felt I knew
more than they did, since I spent hours and hours reading the latest
literature. What was even more puzzling was when I went out and
spent a fortune to buy my own sleep lab equipment, I couldn't
reproduce their results. I have sent my nightly recordings to many
folks all over the country. No one else see Central Apnea in my data.
When confronted with this, my Sleep Doctors said 1) I was practicing
Sleep Medicine without a license (something I learned from Rested Gal!),
and 2) I didn't know what I was doing since I didn't do my recordings
in an "official" Sleep lab. They said "Don't look at any data --
Trust Us!! You be the Patient and we will be the Doctors"

Unfortunately my inner nature is to QUESTION AUTHORITY. Even though
I am not from Missouri, I NEED TO SEE FOR MYSELF, before I will believe.

Am I recommending the Pillar or Dental device to you? Heck no! You
go do what you believe in. My story is just my story. Not a double-blind
properly conducted, statistically sound medical study. Now I can
focus more on finding a solution for my Arthritis. I have had both
hips replaced, and now the Doctor told me I need to do my elbow,
thumb, knee, and shoulder joints.

[snork1]

snoredog wrote:...."Not this fish, but this is CPAPTALK, if you want to discuss snake oil treatments like Pillar take that crap back over to TAS where it belongs.".....

And I forgot to mention that you shouldn't expect many congratulations or open minds discussing your approach.
After all, a single approach with CPAP works so well for everyone. ...D'oh
All snoredog's responses show is just how grumpy people can get when their apnea therapy is not working out well.

To answer the non-knee jerk reaction, actual serious question:
A good ENT to get your nose breathing working is a good idea no matter what approach you try for apnea therapy. But without insurance, this could be tough since the costs add up quickly. CPAP didn't work at all for me before getting 3 hours of sinus surgery done. Even with insurance that cost a chunk of change, but it sure seemed worth it for me.

And I don't remember anything in meister or my testimonials that came close to claiming that dental devices are a panacea for everyone...unlike CPAP which we know is just a smooth sailing slam dunk cure-all for everyone.

[kavanaugh1950]

I AM HAPPY FOR BOTH OF YOU! PEOPLE ARE DIFFERENT AND WHAT WORKS FOR ONE MAY NOT WORK FOR THE NEXT PERSON. EVERYONE HAS TO FIND THE TREATMENT THAT WORKS FOR THEM. I AM GLAD YOU FOUND YOURS.

[Snoredog]

[quote="snork1"]snoredog wrote:...."Not this fish, but this is CPAPTALK, if you want to discuss snake oil treatments like Pillar take that crap back over to TAS where it belongs.".....

And I forgot to mention that you shouldn't expect many congratulations or open minds discussing your approach.
After all, a single approach with CPAP works so well for everyone. ...D'oh
All snoredog's responses show is just how grumpy people can get when their apnea therapy is not working out well.

To answer the non-knee jerk reaction, actual serious question:
A good ENT to get your nose breathing working is a good idea no matter what approach you try for apnea therapy. But without insurance, this could be tough since the costs add up quickly. CPAP didn't work at all for me before getting 3 hours of sinus surgery done. Even with insurance that cost a chunk of change, but it sure seemed worth it for me.

And I don't remember anything in meister or my testimonials that came close to claiming that dental devices are a panacea for everyone...unlike CPAP which we know is just a smooth sailing slam dunk cure-all for everyone.

[Snoredog]

but not in Sleep Medicine

I had two $3000 sleep studies done by two different Doctors, but in
the same Sleep lab. That was their diagnosis! Of course, I thought
they were clueless and uncaring, but who are we to challenge Board
Certified Doctors who have extremely high ratings?? What always
puzzled me, with most discussions with Doctors, is that I felt I knew
more than they did, since I spent hours and hours reading the latest
literature. What was even more puzzling was when I went out and
spent a fortune to buy my own sleep lab equipment, I couldn't
reproduce their results. I have sent my nightly recordings to many
folks all over the country. No one else see Central Apnea in my data.
When confronted with this, my Sleep Doctors said 1) I was practicing
Sleep Medicine without a license (something I learned from Rested Gal!),
and 2) I didn't know what I was doing since I didn't do my recordings
in an "official" Sleep lab. They said "Don't look at any data --
Trust Us!! You be the Patient and we will be the Doctors"

Unfortunately my inner nature is to QUESTION AUTHORITY. Even though
I am not from Missouri, I NEED TO SEE FOR MYSELF, before I will believe.

Am I recommending the Pillar or Dental device to you? Heck no! You
go do what you believe in. My story is just my story. Not a double-blind
properly conducted, statistically sound medical study. Now I can
focus more on finding a solution for my Arthritis. I have had both
hips replaced, and now the Doctor told me I need to do my elbow,
thumb, knee, and shoulder joints.

HOW are you seeing the Central events?

My understanding is you can only see that information on a EEG or ECG. With typical home monitoring you don't have the probes attached to your scalp or the machine to monitor it.

I know many of the recording autopaps can "confuse" obstructive events for central and even respond to a central event as if it was obstructive. That happens a lot if you have a Resmed Vantage machine. They try and avoid those conditions in their algorithm but none are actually very good at it.

I would suspect if you were having central events during the night you are awakened quite freqently. That is the problem with CA events, they are not arousals that just kick you out of deep sleep or REM, they can and usually do kick you all the way back to a WAKE state.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): resmed

[3isles]

Just a hearsay testimony for the poor despised dental treatment of osa.
My daughter just got out of a LONG stay in a PICU, while we ( I always stay with her when she is hospitalized) were there I used my cpap every night so of course it got around the unit that I had osa. One of her doctors (neurologist, pediatric attending, chief of pediatrics....so a doctor for real) talked to me about his osa. He had been on cpap pres of 12 (so seems to me not so mild osa) he said it was impossible for him to get enough sleep with cpap when he needed it, couldn't get quick naps between calls when he was on call for days on end, and he was suffering for lack of sleep.
He has a Tap now, he showed it to me, because we were concerned about how I would be able to care for her overnight at home and hear her alarms and stuff with pap on. and its working for him. He used it with his cpap for several months and now is able to use Tap alone.

It is definitely working for him. It has made his life and job possible while still treating his apneas.

and I didn't know that people who post on other forums were not allowed to post here, or are there only certain subjects that are forbidden?

[Arkanoid]

Congratulations on it working for you. I read the retorts to your choice of treatment (and others in previous messages) and wonder how many that respond have never tried anything other than what was first prescribed to them. It seems like the eternal quest for the "perfect" numbers or great night's sleep. My numbers are good, but I don't feel any better than I did before I started 6 months ago. To me it compares to the chinstrap/taping or whatever other "trick" is out there. Reading here, the discussion on which is the "best" mask goes forever. I finally have one that is decent and doesn't leak too much. To me it seems like whatever works best for that person is the thing to do.

All of it reminds me of the early computer days when the quest was for the most available memory to work. Of course I am talking about nearly 20 years ago.

I would try just about anything to get a great night's sleep, keep my wife happy with no apnea or snoring and get away from the eternal quest.

[imperfectspouse]

Meister and Snork1,

Congratulations! I think it is great when a treatment is successful. It in NO WAY diminishes anyone else's treatment choice.

I think for many people the whole "CPAP" experience is difficult, so an easier yet still effective treatment is a welcome thing. I know in our home CPAP has been tough on my husband and me. It is necessary, and we are so grateful that it is available, however, we would both love a less disruptive alternative.

I am glad Meister and Snork1 posted their experiences on this site. After all, this is not a sleep center, everyone is simply offering their own experiences and knowledge to assist all in improving their health.

Blessings to you all.

[Fletch]

CPAP is a treatment and not a cure. All it does is manage the problem in a non surgical way. Back about 6 years ago a colleague had severe apnea that was cured by moving his jaw forward (I kid you not) after which his airway was no longer obstructed and he was fine. Personally wearing a mask every night seems like an easier option. I am sure if we wanted to undergo surgery (and the insurance wanted to pay for it) there would be any number of permanent solutions.