2 years of CPAP+a few surgeries later & an extruded implant

[forwhatyoudreamof]

Hi everyone,

Long time lurker first time poster.
I'd thought I share my CPAP experience so far.

Got diagnosed with severe sleep apnea at the end of 2006, which was a complete shock to me as I was only 26 and in great shape.

I took to CPAP like a duck to water, and from the first night of treatment I woke up feeling like a million bucks and better than I could ever remember feeling since I was a kid.

My life turned around completely, I almost got fired from my last job because I was falling asleep at the desk and in dark meeting rooms, so I quit that job and started afresh.

Fast forward 2 years later, life is great but not as good as I could hope. I always wanted to go travelling and didn't want to have to lug my CPAP equipment around, also I didn't want to be on CPAP forever. I was desperate. I would try anything to get rid of OSA.

So, I found a good ENT.
As long as I could remember, I could never breathe properly through my nose because of a crooked septum.
First operation in August 2008, was a septoplasty to straighten the septum. Following by a turbinectomy to reduce the size of my huge turbinates.
That healed up nicely and CPAP worked better than ever with the nasal passages cleared up.

Second operation in March 2009, consisted of:
- A tonsillectomy to remove the tonsils in hopes of increasing throat airflow.
- Limited lateral palatoplasty (akin to a facelift of the throat), also to increase the airflow by widening the passage
- Pillar Implants.

This was preferable in me and my ENT's opinion as a traditional UPPP has too many risks with minimal benefits.

The pain from this one was agonising! After it all healed up, I went back for a review.
Bad news. One of the pillar implants was uncomfortably close to the surface of the skin. This could happen because of the ackward angle when the pillars was inserted. Unfortunate, but, the ENT did a review operation for free, where he cut a flap to the side of the implant, and cut off a few millimetres that was too close to the surface.

So... After all that surgery, I don't really see any great improvements in my OSA yet.

I tried going off my mask for a weekend just to see if it made a difference. Nope. I still snore like 20 chainsaws going off, according to my gf.

I can only hope and wait and see.

I do understand that it does take a few months before the pillar implants start to work due to scarring of the tissue.

Andy

[rested gal]

Welcome to the message board, Andy.

Sorry to hear that you've been having problems.

Have you checked the "results" on your Elite, to see what your AHI, AI, HI, and leak rate are in the morning after using your CPAP?

[forwhatyoudreamof]

Thanks Rested Gal.

I've got pretty much a perfect fit with my Aura headrest, so the results in the morning usually shows
AHI = 5 to 6
AI = 0 to 1
Leaks = 0.0 to 0.1

Sigh.... I LOVE my mask....

[forwhatyoudreamof]

Its been a while, thought I'd update this thread.

So, bad news regarding my pillar implant. I went back under general anaesthesia had the end trimmed off one of the pillar implants, which was sitting too close to the surface of the skin.
4 weeks later, I had a review and the site was swollen, and the implant was still getting pushed to the surface... I went back in for another operation, this time, the ENT snipped off about a centimetre of the implant and stitched it up again.

Now, 6 weeks later, I just came back from a review, guess what..... its poking through again!!

Obviously my body seriously doesn't like the implant and its doing everything it can to reject the foreign object. I've got an odd white lump in the back of my throat now, and I can feel it when I swallow...

So... in a couple of weeks, I'll be going back to surgery again, this time he'll completely remove the implant!

Jeeze.... what an ordeal... I don't think I've ever had that many operations in such a short period of time

[5aces]

Well,you have had quite a journey.

All in the name of easing cpap use or the hope of eliminating it!

Membership in the surgical club is often fraught with highs and lows.

Thanks for the post,I admire your determination.

Often I feel like the proverbial lion tamer,whip and chair in hand,except the lion somehow morphed into a cpap machine!

(there are nights when I imagine using a whip and a stick of dynamite,truth be known...)

Trying to heal or be treated for other maladies while using cpap is a real test.

[SleepyT]

Andy,
Sounds like you've had a real struggle there. Sometimes I catch myself thinking, "How can I get out of this?" too....but it is only a fleeting thought and I believe acceptance is my better option. Hope you recover from all the surgeries nicely....and best wishes on your continued journey...

SleepyT

[pstr]

From what I've read, the newest surgical treatment strategy ie. Stanford Sleep Clinic, is the multi stage, three pronged approach. Nasal, palate and tongue base are addressed as needed. You had the nasal done, you had part of the palate area done and you made no mention of the tongue base area. Since you're still snoring heavily I wonder if the palate/uvula is still obstructing and/or you have a tongue base obstruction that was ignored by your Dr. At the very least, you want to invesgtigate some type of a tongue procedure. many of them are reletively low on the pain scale vs. the UPPP and can even be reversible you nessesary. Just a thought.

[forwhatyoudreamof]

Thanks for the kind words guys, it really means a lot.

Yep, you hit the nail on the head spot on SleepyT! I'm just struggling to find any and every way possible to eliminate the need for CPAP completely.
Its been great, the last 2 years that I've been on CPAP, I can't remember feeling this good the past 10 years or so that I've had apnea.

Hey pstr, thanks, I'll have a look into tounge procedures... I did see some material on these, looks rather promising.
One other avenue I'm hoping to try out, would be a Dental Mandibular Advancement appliance where you wear while sleeping and it keeps yr jaw forward.

As grateful as I am for CPAP when it works perfectly, there's another dark side to it, where I'm struggling to face the fact that there are nights, where I can't fall asleep no matter how hard I try because I'm too aware of the mask on my face. I would like to go backpacking around the world someday, without having to carry my cpap device along...
Also, I had some confidence issues earlier on as well, where I was worried it would affect my dating life, it was kinda ackward trying to explain to someone who's about to share your bed that yeah, I have a sleep disorder and I need to put this thing on my face now...

-----------

So.. I've just come back from my appointment with my ENT surgeon. He was really apologetic and sorry that the pillar implant extruded and told me he's booked me in for surgery next tuesday (8th Sep 09). He will put me under, and completely remove the extruded implant, and will also perform another turbinectomy as my left nostril isn't breathing as clearly as my right.

He's great though, he isn't going to charge me anything for the procedure as he felt it was a job he should complete, and has also found an anesthetist who charges under the gap scheme, so that my total out of pocket costs will hopefully be limited to just the pharmaceutical costs in the hostpital.

[forwhatyoudreamof]

For anyone who might be interested, I took some photos to try to show you guys what it looks like when a Pillar Implant goes wrong and gets extruded.

Look at the back of my throat, there will be a large white lump towards the right... that's caused by about a few millimetres of the implant sticking out, and the white bubble is just the body trying to heal/attack the extruded pillar where it breaks the skin.

I am not in any physical discomfort, still am fairly active at the gym and sports. Just sometimes when I swallow, I can feel like there's something lodged at the back of my throat..

[Treehorn]

Dental Mandibular Advancement appliance where you wear while sleeping and it keeps yr jaw forward.

If you want any info on these oral appliances you can PM me. I know quite a bit about the different types and their pros and cons. Since this is a CPAP forum and not an oral appliance forum I will not go on at great lengths about them but you seem really motivated to try and get off of CPAP.