Odd Sleep Apnea/CPAP/Tonsillectomy Questions - LONG

axpmaluga · Post by **axpmaluga** » Sat Dec 29, 2007 10:00 am

Hi, I'm new here, so bear with me...

I have what I think is a very weird type of OSA and have had it for about 10 yrs. I am 25/m. I do not have what I would consider traditional snoring, when I sleep I simply hold my breath until i wake up. This has little to do with something "obstructing" an airway; it would be the same as you, right now, just deciding you were going to hold your breath until you had to breath again. The other thing that I do is continue to exhale until I wake myself up to inhale. Again, I don't think this has much to do with obstructions, just weird things my body decides to do. I have been on CPAP for about a year and while it helped it definitely did not fix everything. I would estimate it helps about 30% of the time and i still wake up with my mask on holding my breath sometimes. 10 days ago I went and had a tonsillectomy, uvuloplasty, septoplasty, and turbunite reduction. Since the surgery I would argue my apnea has gotten worse. I have not used my CPAP since but am considering trying soon (my throat has not been up to it). My questions are: first and foremost, how strange is my apnea? I've never read or heard of people with this type of breathing problem. Second, if you have similar breathing issues, what treatments have been successful for you? Also, am I judging my surgeries too soon and after swelling goes down more should I be in better shape? I am very upset that surgery did not seem to work because for once I would just like to have a good night sleep. I'm not sure the make/model of my CPAP but it is a full mask, I am comfortable with it, and I know it has that sensor that's supposed to kick up the pressure if it feels you not breathing. It does have a memory chip in it although I've never read any of the information off of it. Thank you for reading of all this and any feedback you can provide.

axpmaluga · Post by **axpmaluga** » Sat Dec 29, 2007 10:09 am

FYI - I checked and I have the Vantage S8 Autoset if that information helps answer any of my questions. Thanks again.

Slinky · Post by **Slinky** » Sat Dec 29, 2007 10:14 am

Well, first off: take a look at the top of your CPAP and see what it says. It should say both brand and model.

Second: it almost sounds like you might have "central" apneas, when the brain for whatever reason just doesn't tell you to breathe. That should be a natural function w/o need of conscious prompting, obviously.

Third: have you been seen by a good neurologist and a good pulmonologist? I would think that would be two specialities that could be of some help to you.

I wish you luck w/a speedy Uvuloplasty recovery. Tonsilectomy & septoplasty can be quite some help in reducing the pressures needed for handling obstructive sleep apnea. I don't know much about the success rate of turbinate reduction surgery.

It sounds like you have one of the more technical, advanced types of xPAP that I have no knowledge of at all except to see them mentioned so a fat lotta help I am. Still, I wanted to welcome you to the forum and hopefully those more knowedgeable will soon respond to your questions.

Meanwhile, if I were you I would want to know and understand more about what what occurred and what information was discovered during your sleep evaluation study. And the place to start w/that is a request to the sleep lab for a copy of the full data summary report (about 5-7 pages) w/graphs for both your sleep evaluation study AND your titration study AND a copy of the doctor's dictated results report (about 1-2 pages) for both studies as well as a copy of your equipment order. If you are in the US you have a legal right to those copies under HIPAA as they are a part of your medical records. If, as you suggest, your xPAP is fully data capable then I would also be insisting on each copy of the prinout of each data download that has been done.

Didn't the doctor who did your surgery suggest how long to wait before using your xPAP again?

Slinky · Post by **Slinky** » Sat Dec 29, 2007 10:42 am

Ah ha! That helps a lot. I was thinking that maybe what you had was a RAD (respiratory assist device) which is MORE than "just" an xPAP.

I have a Resmed S8 AutoSet Vantage as well. A darn good autoPAP. It just sounds like you need MORE than just a good autoPAP, maybe even more than just a good bi-level (Bi-PAP is a proprietary name). But what do I know? I'm no medical professional, just an OSA patient for the past year.

We can tell you how to access a limited amount of your data w/the Vantage. Press the Left and Right buttons and hold them for 3-4 seconds. Efficacy Data will pop up on your LED screen. No need to worry about accidentally, or even intentionally, altering your data or therapy from this menu. It is an advanced patient menu that the sleep doctor can opt to allow you access to or not as he chooses.

Once you reach the Efficacy Data menu it is just a matter of Left button to Enter, Right button to Exit, Up button to return to the previous screen and Down button to advance to the next screen.

The Pressure shown will be the pressure AT OR BELOW WHICH you spent 95% of that night, the Leak rate shown will be the Leak AT OR BELOW WHICH you spent 95% of the night. The AHI = apnea/hypopnea index, the number of apneas and hypopneas combined that you experienced PER HOUR that night. The AI=apnea index, the number of apneas you experienced PER HOUR that night and the HI=hypopnea index, the number of hypopneas you experience PER HOUR that night. Once you've used the Vantage long enough you can also see the averages of all of these for the last week, last month, last 6 months and last year.

The caveat is that you MUST access this data BEFORE NOON on any given day as the previous night's individual data rolls over into the averages at noon. These xPAPs work on an internal, 24 hour, noon to noon, clock.

Usage data will reveal the number of hours you have used your Vantage, the number of nights you have used your Vantage/the number of nights since you first used the Vantage and the number of hours you used your Vantage that night.

socknitster · Post by **socknitster** » Sat Dec 29, 2007 1:14 pm

At 10 days post surgery, I would EXPECT your apnea to be worse. Your entire nose/throat airway is swollen because you have had surgery. Don't be impatient. It takes time to heal.

It took 6 weeks after my tonsilectomy to see reliable improvement in my sleep. My AHI as well as my required pressure improved. I went from an average AHI of around 2-3 to an AHI reliably under 1. My treatment pressure went down by about 3 cm of pressure. I have continued to see very subtle improvement over the following months (it has been 5 months since the surgery). I have had MANY days of AHI under 0.5, including one day with 0.0.

If you are having central apneas, I can't help you with that except to say that I think they make special machines for that and all of this should have shown up during your sleep study and the proper machine prescribed at that time. Perhaps you should get a second opinion by taking your sleep study results (a multi page printout they should give you at the sleep lab if you request it) to another sleep doctor in your area.

Hope that helps. You sound very tired. I hope you find some solutions.

Jen

socknitster · Post by **socknitster** » Sat Dec 29, 2007 1:22 pm

You also need to take charge of your own therapy and learn to access and understand the data from your machine. You can learn that here. It may be that the machine is not set optimally for your needs. For example, if your prescription pressure is 16 cm of water and the auto machine is set at 4-20, then it starts each night at 4 and you can have many apneas before it can get you up to a therapeutic pressure and settle there. You may need to tighten the range that the machine is set so it can respond quickly and appropriately.

If you are not getting the proper therapeutic level for YOU, you will still wake up having apneas. The feeling of waking up after holding your breath is the way we all feel when we have an apnea. You may have central apnea, or you may not be getting proper therapy. The only way to tell the difference is to inform yourself about how your machine works, learn to understand the data it has there to offer you, and talk to an experienced and caring doctor or RT or experienced members here.

Jen

wabmorgan · Post by **wabmorgan** » Sat Dec 29, 2007 1:35 pm

socknitster, what was your Rx prior to surgery????

Guest · Post by **Guest** » Sat Dec 29, 2007 1:38 pm

Ok, so thank you everyone first and foremost for offering advice. It seems like while I thought I was taking control of this (getting CPAP, having surgery, etc) there is a lot more I can and should be doing. I grabbed my CPAP and plugged it in, it has no data for the last week (because i haven't been using it since my surgery) but I can look up long term data. I'm pretty good about using it every night and here are the readouts for 6 months:

Press: 10.8 (i don't remember what i'm prescribed, it was set up correctly, but I have upped it on my own once or twice when i thought it wasn't working well)

Leak: .32L/s
AHI: 6.6 (this seems high to me, no?)
AI: 2.6
HI: 4.0

Can you offer any insight? Thanks again.

sleepycarol · Post by **sleepycarol** » Sat Dec 29, 2007 1:49 pm

Welcome to the club!!

Please click on the yellow light bulb and the red question mark for help. Under those you will find all kinds of information that petains to issues of sleep apnea.

What did your sleep report say? If there were no obstructions I agree it sounds like you have centrals -- but I thought those were treated with more sophisticated xpaps. Just because you don't snore doesn't mean you don't have obstructive sleep apnea. You wouldn't feel the obstructions. You are not even aware of the obstructive events until your body responds to the events -- and even then you wouldn't necessarily know you had an event.

Sleep apnea is more complicated than "simply holding your breath". Our natural normal response even in an unconscious state is to breathe. Something is short circuiting with you apparently. I would have thought that if you had a sleep study they could have pinpointed the reasons that this was happening.

I would definitely do a follow up with the sleep doctor or obtain a second opinion.

As far as your surgery goes you haven't given it enough time for your body to completely heal. You will continue to heal for quite some time and you won't feel the full impact of the procedures until all the swelling is gone. I am assuming you are unable to use your cpap and due to the swelling I would think your apnea would indeed be worse. Try sleeping in a recliner or with a pillow wedge to help.

Be good to yourself and allow your body to heal.

Keep coming back for support!! Here you can vent, ask questions, cry with us, and laugh with us. This is a very theraputic forum!!

Julie · Post by **Julie** » Sat Dec 29, 2007 5:54 pm

See if you can get a referral to a neurologist re your sleeping pattern - you really need to get properly diagnosed (and no one here's an MD, nor can we test you in any way).

axpmaluga · Post by **axpmaluga** » Sat Dec 29, 2007 8:10 pm

Thanks, I was simply looking into insight to see if my numbers are high, I'm not too clear on what would be normal/abnormal. I am seeing my ENT in a couple of weeks to follow up on my surgery and plan to discuss with him the sleeping situation as well as a possible referral to a neurologist.

Snoredog · Post by **Snoredog** » Sat Dec 29, 2007 11:42 pm

[quote="Anonymous"]Ok, so thank you everyone first and foremost for offering advice. It seems like while I thought I was taking control of this (getting CPAP, having surgery, etc) there is a lot more I can and should be doing. I grabbed my CPAP and plugged it in, it has no data for the last week (because i haven't been using it since my surgery) but I can look up long term data. I'm pretty good about using it every night and here are the readouts for 6 months:

Press: 10.8 (i don't remember what i'm prescribed, it was set up correctly, but I have upped it on my own once or twice when i thought it wasn't working well)

Leak: .32L/s
AHI: 6.6 (this seems high to me, no?)
AI: 2.6
HI: 4.0

Can you offer any insight? Thanks again.

socknitster · Post by **socknitster** » Tue Jan 01, 2008 6:00 pm

wabmorgan wrote:socknitster, what was your Rx prior to surgery????

My original prescription was 16/12 bipap. I was running an upper number of 13 to 15 on auto bipap before the surgery. I now see mostly an upper number of 10 or 11.

My diagnosis was sleep apnea with gigundo tonsils. I had wanted them out for years because during allergy season they swoll up and touched each other, creating a gagging sensation--all day and all night gagging, what fun! When 3 separate and unrelated physicians recommended I do it (a neurologist, an oral surgeon and an ent--although the ent wanted to do more than the tonsils, that was all I was willing to allow him to do), I decided it might help me.

There seems to be little documentation on adults having tonsilectomy related to sleep apnea, although for children it is considered a cure in most cases, as it was for my 4 year old son, who got huge tonsils from both me and his Dad. His Dad had his tonsils out at age 7 for the same kind of reasons--constant viral infections and sleep problems.

Many doctors seem to want to go the way of UPPP surgery for adults. I was unwilling to have my normal sized uvula and my "very trim" palette cut, causing unnecessary pain when the doctors seemed to agree that my main problems seemed to be extra large tonsils and a small mouth coupled with a large tongue. Starting with the tonsils seemed logical and it is a very common surgery with only small risk.

I know that the tonsilectomy really helped me. It got me down to a pressure that is low enough that, combined with an acid reducer, allows me to sleep on my side with less aerophagia, making sleep far more comfortable.

I eventually will address the large tongue which I hope will get me off of cpap. There is a surgery in trials using a device called the Aspire, which is a form of tether that holds the tongue in a more forward position so it can't fall back in the throat. Supposedly it doesn't affect speech or eating. I qualified for the trial except for one thing--I haven't failed to adjust to cpap therapy. I probably should have pursued it anyway, but I didn't for two reasons: I want to wait and see how the results of the study play out and I wanted to get pregant which made taking a risk like this impossible. So, maybe I will do it at a later date unless something else comes along that sounds better.

I hope that answers your questions.

Jen