Drumroll Please - Here is your Pillar Implant Pre and Post S

[Sleepy Stoboy]

Well, I know some of you have been interested to see another pre and post pillar implant set of data, so here goes. It's interesting to compare my results with PaulY, who posted his stats here a few months ago.

Some background for those who haven't followed my pillar saga: I was tested initially in September and diagnosed with sleep apnea and an RDI of 35 and a low point of oxygen saturation at 86.5%. After doing as much research as I could, I met with one neurologist, two ENTs, and a dentist specializing in apnea. I took each of those consultations and developed a treatment plan that looked like this (in priority):

1. Pillar implants
2. If needed, TAP device
3. If TAP unsuccessful, autopap
4. Other surgeries (GA, hyoid, repose)
5. Would not consider UPPP

In November, I had the implants put in. My ENT advised that my RDI was outside of the range of the clinical test group Restore Medical used, and that while my palate was long, that while the implants might help, the likelihood of a "cure" was very uncertain.

The next 90 days were very up and down. I had a three week period after surgery where I could noticeably tell I was sleeping well. Then about a 5 week period of not sleeping well again. Lastly, a period of sleeping better, but still waking up 4-5 times a night that I remembered. A significant change was that I was dreaming again, and lots of dreams. And my daytime sleepiness wasn't as bad. Those were the "qualitative" results.

In late January, knowing myself that I wasn't "cured" from the surgery, I ordered up a TAP device and began using it. Not much change the first two weeks with very slow advancement, but very good results these last two weeks. I'm very close to hitting the breakpoint with the TAP, however I now need to reorder a new bottom mold as the current one is slipping. I will have a sleep study later in the year to titrate the TAP.

About three weeks ago, at about the 90-plus days from the implant surgery, I had the post pillar sleep study. Here are the pre and post results side by side from the same sleep center.

RDI: Before 35.8 After 18.4
Supine RDI: Before 67.1 After 41
REM RDI: Before 19.9 After 16.9
Lowest Oxygen Sat Before 86.5 After 89
REM Sleep % Before 10.7% After 22%
Stage 1 Sleep Before 20.3% After 16%
Stage 2 Sleep Before 33.7% After 45%
Slow Wave Sleep Before 5.3% After 0%
Sleep Efficiency Before 70% After 83%*

* this number effected as the man in the room next to me was coughing up a lung in the middle of the night, and it was so loud I couldn't fall back asleep for almost an hour...

So, there's the before and after picture. I'm glad I had it done as I definitely slept better after the implants. If I'm caught without my TAP, I can count on a better nights sleep. I also feel that I was able to permanently (I hope) reduce my level of apnea/hypopneas with the surgery. I'm still in the process of working with insurance to get it paid- but this is still somewhat unlikely- so cost is a consideration for many.

I want to thank PaulY for his counsel and for the "methodology" of how he pursued his own treatment plan. I think that was a key understanding for me through this- that you need to get as much information as you can, and then be your own advocate, not allow the opinions of one doctor effect your decisions.

Based on my experiences and the clinical study, this seems like a strong consideration for anyone under a 20 RDI whose ENT has profiled their palate as a contributor to the problem. And for those over that level, this surgery may well be the first of a potential one-two punch if a good rear of tongue surgery can be promoted with good results.

Let me know if you have any follow up questions. I'll be posting on the dental board how the TAP continues to work for me. Thanks again for the support and information of this board, it had been beyond invaluable to me.

[PaulY]

Stoboy,

Words can't express how happy I am for you. Look at those numbers! The Pillar Implants reduced your RDI by 51%, I only got a 40% reduction.

Well, that tells ya your palate was half the problem, doesn't it? WAS being the "key" word.

I fully expect that your post-TAP PSG results will show a ZERO number.

I think we are on the brink of new solutions to this malady, Pillar and TAP being just the start.

Congratulations, brother, congratulations! And enjoy those dreams.

-PaulY

[<HH>]

Things look good for you and seem to be going well.

What I would be concerned about now is ensuring that your blood pressure stays in the normal range. While your first concern is "good sleep" the next ting to address is watching out for risks of OSA, like hypertension, reflux, etc.

[Sleepy Stoboy]

Thanks rested gal!

It's another thread, but it is very important to me that no one misunderstand that by my prioritizing other treatments, that in any way am I critical of CPAP. I've gained such a respect from the way CPAP users work feverishly to find the right solution with their own equipment, and then reach out to help others so passionately. This is truly a board of people caring for, and helping other people.

When it came time to decide between autopap and TAP as a second line treatment, the autopap was very convincing. What people have done by monitoring their sleep data and making adjustments is incredible. For impatient people like myself, this is a lousy condition to have. This board reaches out and gives people information and hope to stay patient.

[PaulY]

Had it not been for my C-FLEX during those first two months on treatment, I don't think I would have made it --- or had sufficient cognitive ability to research and find other treatment methods.

As medical advances like the Pillar arrive within our lifetime, more and more people will have choices that may be more comfortable for them and may, in combinaion, work just as well as PAP.

So far we have no single alternative that, like PAP, is a one-punch treatment for all types of obstruction. Most of us will have to combine different treatments in order to approach the efficacy of PAP, the Gold Standard.

As for myself, I will keep my C-Flex in case I need it one day.

-PaulY

[Sleepy Stoboy]

HH,

We're absolutely thinking along the same lines.

My BP has skyrocketed these last four years, and I've continued to try and treat it with medication, fitness, etc. Not much luck.

Post pillar, my numbers are still the same. Hopefully after 2-3 months with successful treatment with the TAP, they'll come down. If not, the OSA is probably not the root cause, and higher meds will probably be needed. I have a history of high BP in the family.

PaulY- thanks for the encouragement, and you're right- I thought the 50% reduction was pretty substantial. Of course, I always hoped I would have a 100% palatal problem, but knew that was pretty unlikely.

[rested gal]

Stoboy, what good news!
You wrote:

quote

Quote:

... you need to get as much information as you can, and then be your own advocate, not allow the opinions of one doctor effect your decisions.

When PaulY's first posts showing his before/after sleep study numbers hit this message board, my initial skepticism changed regarding what the Pillar Procedure could do - and what Pillar plus TAP could do.

While I'm quite comfortable and well treated with autopap/mask, I'm very interested in keeping up with what works for others. Thank you both - and Gipper, sehay, RachelE, writerman, Debbie (extra thanks to her for some equipment!) and others, for continuing to post your stories on this forum and on the Dental Sleep Medicine forum of this site.

You said it right, Stoboy: educate ourselves, be our own advocates, make our own decisions. Doctors come equipped with not only their medical degree but also their own biases; together with wide differences in diagnostic abilities and skills, no matter what treatment an OSA person is considering - be it CPAP or "something else".

I'm glad to hear your carefully considered steps along "something else" are working well so far, Stoboy! I wish you the best of luck the rest (no pun intended!) of the way.

[Josh]

Congratulations! seems like your Pillar is working considering the stage of your RDI level to begin with.

[Sleepy Stoboy]

Thanks Josh, granted if I could have had my wish, I would have liked a "cure". But the reality is that I invested some money and a couple of hours of minor pain for a 50% reduction in my overall RDI. I guess I went from the low end of severe apnea to the low end of moderate apnea with one surgery.

If I get caught without treatment, my sleep will be better than before. And I also know that I've addressed one of the areas I'll need to address to arrest this problem surgically.

[-SWS]

Congratulations, Stoboy!!!

Some of us are seriously thinking of resuming our former Lucky Charms life styles with stats like those to bail us out!

[Sleepy Stoboy]

You're going to spoil my next medical breakthrough, the Leprechaun Implant Procedure, in which tiny leprechauns are implanted in your airway and prevent its collapse.

However, in our testing, it is proving that repeated use of Leprechauns can cause the airway to sag, so long term use may be detrimental.

Dr. Tutu will be presenting his findings shortly.

[Guest]

SleepyStoboy,
I am delighted to hear that you had such great results! I don't want to rain on your parade here, nor do I want to discourage people from trying the Pillar Implant, however before everyone gets hope this may be a way out of apnea treatment, I want to say that my sleep is ( and this is by self report, not by a sleep study) worse after the implants. I say that because, before the implants I could fall asleep without CPAP, now I can't. My snoring seems to be worse and I wake myself within minutes of falling alseep.

I'm not even going to bother the expense of getting another sleep study done at this time, thoughI might consider it after I speak to my dentist about TAP.

My ENT said there is no way for him to predict who will have success with this procedure and it is NOT the great white hope for everyone hoping to rid themselves of apnea treatment. For some it will be a highly succesfull procedure, for others like myself it will not accomplish anything. So for everyone considering this procedure, do so with the understanding this isn't the cure for apnea.
Rick

[Guest]

Hi Rick,

Certainly agree with you on most of what you've posted.

I think the big caution here is in the expectations. Anyone who is expecting a "cure", a "one and done" procedure to eliminate their apnea is going to most likely be disappointed. When you review the clinical data, I think perhaps 20% of the group (and the group were all under 30 RDI to begin with) were "cured". And I'm skeptical about single night sleep studies anyway- wonder how much variation you can see if you were able to get even a 3 night average.

From the studies, it looks like about 80% had a "significant improvement". You may have fallen into that other 20% where you feel you actually had some worsening. Perhaps it's a result of the cysts, and maybe in time you'll see some improvement? I sure hope so.

I'm not sure I agree with your ENT completely though. I do think that a good endoscopy can tell a lot with the right physician who knows what he's looking for. My ENT delivered exactly what I got- he predicted that the palate was not the sole problem, but significant enough that it could be addressed. I think in some ways your ENT probably lacks some confidence in the procedure, and as he does more, will probably feel better able to predict which patients will have success and which will not. You may well have been turned away on this procedure by another ENT, who had more experience with it. You see the same stories regarding UPPP. The top notch ENTs have much better success rates as they know what they're looking for. Others seem to advise it more as a "well you can give it a try" approach. I'm not advocating UPPPs, but I think there is a correlation here between success rates and good profiling.

[Rachel E]

I agree that a knowlegable ENT using and endoscope should be able to give you some valuable information. Most of us, though, don't have an ENT that knows all that much about OSA available to us.

It gets very expensive and tiring taking the "try it and see" approach but for most of it, this is as good as it gets.

However, it is SO valuable for us to let each other know what works and doesn't work and other information such as:

How severe is your OSA?
Do you snore more on your back or side?
Are you considered of normal weight?
Does sleeping in a recliner help or not?
Do you have difficulty breathing through your nose during the day?
etc???????????
and then, what worked successfully in your case?

For instance, I fell asleep in my husband's recliner Sunday and had some of the worst apnea ever. i thought I was going to die. Yet, recliners help others. Somehow, information like this, when put together, should help us have at least a clue where to turn next.

Some have had total or near total relief with the cpap. For others of us, that level of treatment somehow eludes us. As for me, I am closer but....alas........no Cuban Cigar....(yet, Hope does spring eternal, I suppose.)
Probable turbinate reduction (when I find a ENT doing the newer procedures....no luck yet) and possible Pillar implants in the future.....

Thanks to those testing the new and old treatments and reporting to us.
You help us more than you will ever know......
Rae

[Guest]

Stoboy

Congratulations on such a good report.

You still have time on your side. Its only been 90+ days since you had the implants and your palate will probably increase stiffening over the next 6 months to a year. When I went to the pulmonologist last week, he said that he would be very happy if I could reduce my RDI to under 20, and you did exactly that!

Thanks for the updates and keep TAPPING.

Sehay