Hard Data for Pillar Success/Finding Alternatives to CPAP

[RickRed]

There are a number of people and many may have left the forum who have found alternative ways to get off CPAP. There has been much debate regarding the data as well as many personal attacks againsts those who advocate a Pillar Procedure.
We just received another person's data. RDI before Pillar 43, RDI after Pillar 13. With the use of a dental appliance, that person is now off CPAP. If you want to read that story it's on my threat about Pillars not curing snoring. That's one more person who can get attacked on this forum for getting off CPAP. Our numbers will continue to grow.

However, why would anyone want to share their success when a few come on board to call you names, attack your motives, and belittle your success.

Besides Stoyboy and Paul, are there others out there who broke their sleep study into parts, Post Pillar without a dental device, so we have pre and post pillar data to share with those considering alternatives to CPAP.

To date I'm not aware of a single person whose apnea was cured with a Pillar, However it would be helpful to hear from those who used the Pillar combined with another treatment to get off CPAP.

But hearing hard data and ongoing success stories would help those who want a different way to treat apnea.
Rick

[Sleepy Stoboy]

That's the most dramatic drop we've seen yet with pillar. Congratulations jnplasty.

PaulY went from 30 to 16 with pillar.
I went from 36 to 18.
Now, jnplasty from 43 to 13.

We have yet to see anyone post with less than a 40% reduction.

Rick, I haven't seen jnplasty in the Restore parking lot. What shift is he working?

[Guest]

It didn't work for me

Before Pillar RDI=27.1
After Pillar RDI=74.8 a 176.0% increase.

RIP

[Guest]

Does anyone know if the "RDI" measurement tends to factor in cortical arousals that occur from snoring? If so, that might be one reason pillar implants can make such a big improvement for some people. If "RDI" does not factor in cortical arousals genrated purely from snoring, then the "RDI" measurement itself likely falls a bit short in measuring the effectiveness of pillar implants in at least some patients.

Yes, I can personally see how pillar implants combined with yet other forms of SDB treatment might serve as a viable alternative to CPAP for some patients, and a better than viable alternative for others. Of course, there will always be yet other patients for whom pillars combined with any non-CPAP treatment will not suffice.

Each SDB treatment method clearly has it's own unique set of etiological characteristics to address. SDB treatment methods are no different than any other form of prescription medicine: no single method works across the board. A key consideration would thus seem to be in matching candidate treatment method (or combination of methods) with match each patient's SDB etiology. Given CPAP's lack luster compliance rates, it seems obvious to me that sleep doctors need to somehow find a better means of factoring in a patient's treatment likes and dislikes. Perhaps sleep science should work on a means
of allowing the doctor to somehow guage the liklihood of CPAP compliance at the very front end of the treament process. Patients clearly need better CPAP sensitisation methods across the board as well.

Clearly a less than "gold standard" treatment method is far better for some patients than a treatment method that is routinely abandoned by roughly half the patients. Asprin works better for some patients while acetaminophen works better for other patients. CPAP works better for some patients while other SDB treatment methods work better for other patients. For those who cannot tolerate CPAP but find viable treatment is other forms, they have simply discovered their own "personal gold standard".

[Guess]

I thought it was other way around Rick. There were few who were booted out since they talk one or things talked against CPAP. The webmaster may solve your dilemma if he or she is impartial and want to root out mal-postings and personal attacks. Please send webmaster an email and try to remind him not to be partial and treat equally.

[RickRed]

Stoyboy,
The reason both your story and jnplasty is so important is that both your RDI's were so high, the current thinking is such that you would not have been offered an alternative treatment, My Dr with an RDI of 14 says only mild apnea patients can find a way off CPAP. Both of you have shown this assumption on the part of the medical community is not 100% accurate.
PS Stoyboy, they make the new restore employee's work the weekend shifts, which is why you didn't know about the newest success story.

Guest, I'm not sure of what your post implied about posts getting removed, but I do see a difference between speaking against CPAP, which is not want those of us who got off CPAP do. We simply tell our story and say there may options that your Sleep Dr hasn't told you.

In fact I'd like to hear from everyone who was Dx with apnea if they were given a choice of treatment options or simply told to order a mask and machine.
Rick

[Sleepy Stoboy]

Yes, I know my ENT was shocked. He felt that once I was outside a 30 RDI, that I was outside the bounds of what Restore had led them to believe through the clinical study. I think conventional thinking is that if you are mild/moderate, then your pillar is the primary culprit, thus making you more likely for palate procedures (UPPP, pillar, etc).

This may prove to be urban legend. There are probably mild/moderate cases where the tongue is the principal culprit and no amount of palate intervention will yield results. Conversely, there may be severly effected patients who may benefit greatly.

43 to 13 is a big deal. It's very possible that a much smaller advancement will now be necessary with the dental device.

Hey and wow, that guest above that tripled their RDI with the pillar procedure is sure calm about it. It's sad that they think that people are that ignorant to take posts like that at face value. They must be a riot at parties with that wacky, cynical humor.

[Paul]

Stoboy, Rick and Jnplasty,

Jn - a BIG congrats on your follow-up sleep study. We need about 100 more of us now to start speaking up about the successes we are having.

For the life of me I can't figure out what some people have against a 10-minute, virtually painless procedure that stiffens a loose palate and keeps it from falling back into the airway.

You'd think we were advocating a UP3, or something!

One year and a half ago I stored the CPAP away, and I would like to help anyone else who didn't like that treatment to do the same thing.

Don't worry about the Dizzy-types. He likes the CPAP and all the more power to him! It's the best thing, if you can tolerate it. If you can't - there are alternatives and we are here to help!

-PaulY

[greyzak]

Hi everyone,
I'm still fairly new to these boards, but I have finally found an ENT that will do the Pillar procedure and believes I should have it. Now I just have to come up with $1200 to pay for it.

I have UARS and some soft palate collapsing issues. My body has gotten so used to my SDB that it doesn't allow me to go into Stage 3-4 ever. This has been going on for over 20 years and as you can imagine I am quite sick.

I am hoping that once I get the Pillar procedure done and use the steroid nose drops, (the doc didn't feel I needed nasal surgery), that I will be able to retrain myself to go and stay asleep. Currently I can't fall asleep or maintain it. Even on meds I wake every hour.

Anyway, if it turns out that I have to have the Pillar, use the drops, and even wear a dental appliance, to me that would be immensely better than the CPAP route. But to each their own. Some may prefer CPAP over all that.

I'm just grateful for this site. It has helped me get much needed info. I truly feel that if I can fix my sleep issues I stand a chance at getting well.

Greyzak

[RickRed]

Greyzak,
Wish you much success with the pillar. Your ENT should have told you it takes approx. 3 months for the pallet to harden around the implants.

While we've seen great RDI reductions with the Pillar, I can't recall a single person on this forum who has been able to get off CPAP with using a dental appliance as well.

I think this demonstrates that for the majority of us our apnea has multiple causes, both the pallet and tongue are involved. I would begin looking for a dentist who has an expertise in Sleep Dentistry.

While most of us off CPAP hang in the dental forum, I think it's very important to keep this topic open because there are many like you who want to treat their apnea without CPAP.
So keep us posted on your journey, the best to you as you do so. Use the forum as you need to help with questions, the people here are very hepful
Rick

[herefishy]

I am presently on month three of CPAP, getting along quite well, and contemplating the Pillar. I have mild/moderate OSA and have had the exam of the back of my throat that says I should have great success with the Pillar. However, I used a Boil 'n Bite dental appliance about a year before going on CPAP, and I feel that the jaw displacement that comes with the jaw advancement is much more uncomfortable than using the CPAP - I couldn't chew properly, and was afraid that I would break a tooth from hitting my bottom teeth against the tops. My question is - I have read about doing jaw exercises in the AM after removing the dental device and wonder - are they adequate to aleviate the symptoms I have described? I would certainly like to get off CPAP, but don't really want to get the Pillar and have to have a dental device, too.

[reducha]

Hey everyone! First timer here. I found this site just surfin' around. I've had sleep apnea for about 13 years now. It's genetic i hear,mom and sister both have it to. I've been to the sleep studys including the cpap one. I thought it was terribly frustrating,,i couldn't slleep with that damn thing forcing air into me,,and secondly,,in the morning i was very bloated and severely cramping from all that air in my stomach in the morning. It took about two hours of farting to get it all outa me. I gave up on it and thought i had to just live with it,,,but i'm looking around again! So,,if you'll excuse a newbie,,,i need a few abbreviations explained to me.
What is: UPP???
ENT???
APAP??
RDI??
Pillar surgery??
Sleep dentistry??
Any help is greatly appreciated! thanks! Timothy

[Less Sleepy]

UPPP - UvuloPlastyPalatalPlasty - The uvula and part of the soft palate is removed in hopes of reducing apneas by increasing the size of the airway at that point. The operation has a notoriously uncomfortable recovery, and very low success rate. Very little objective data is available to confirm any effectiveness.

ENT - Ear, Nose, and Throat specialist, a physician

APAP - An Auto-adjusting Positive Airway Pressure generator. This machine responds to flow restrictions on a breath-by-breath basis, increasing the pressure when necessary, and reducing the pressure when it is not needed.

RDI - Respiratory Disturbance Index, the average number of disturbances per hour caused by respiratory events such as apneas, hypopneas, or other airway resistance.

Pillar Surgery - Also called Palatal Pillar Procedure - This is an in-office procedure where 3 fabric cylinders are placed in the palate under local anesthesia. The object is similar to the UPPP, but with much less pain. I understand that there are some objective studies underway for this procedure, but it is new for any to be complete. I would guess that the effectiveness is likely to be similar to UPPP (not good), but with much less pain.

Sleep dentistry - A sleep dentist has training in fitting devices that can reduce apneas. You can check out the dental medicine board, where a number of posters are successfully treating their sleep apnea with dental devices or with a combination of the Palatal Pillar Procedure and dental devices.

[RickRed]

Herefishy,

[dizzy]

Rick, Rick, Rick you, Stubby & Paul need to check out this thread, save your money man, try a procedure that is guaranteed to cure your snoring, something that actually works, they are so sure it comes with a money-back guarantee if your not absolutely delighted:

http://www.talkaboutsleep.com/message-boards/viewtopic.php?t=13884

Does Pillar offer a money-back guarantee? Sound too good to be true? Stubby, check out the medical studies man, why they used even MORE patients in their study than Pillar did and 94% still saw relief! Why that's even better results!

Check it out, just passing on the info, they even have real patient Testimonials that make it even all the more legit.