Newbie - What to ask/demand from doctor?

I have been diagnosed with apnea. All I know is that my oxygen got to 87% and I had apnea 53 times/hour. I do not know how bad except that my doctor called it severe.

I am 35 years old and a little overweight. I had lost 20 pounds before my first study and still had the above results.

I have some questions and don't know who else to ask as I don't know anyone in my area dealing with this.

1) Why are you using a machine and not going with surgery? Doc told me I had a 40% chance with surgery of getting better and that a second more severe surgery (jaw-breaking involved) would push it to 80%. I don't want a broken jaw but was wondering if it might be worth it.

2)Are my above results really bad? I do wake up sluggish and don't always feel sharp. I never just all asleep doing something but if I sit down with a book I might.

3) I am very upset about having to be hooked to a machine for the rest of my sleeping life and I'm not sure I can do it (I'm venting my frustration). Is it worth it? Will my quality of life be improved to where I'm glad I did it?

4) What kind of equipment should I ask for? I don't want to get stuck with some piece of junk that I can't use and if I have to do this I'm willing to pay for something good. Please advise me on what I need to tell the doctor so I can be informed when I go in.

Thanks for your help. For some reason this whole situation has really made me despair. I was hoping a few swipes of the knife would cure me but it's more involved than that and now I don't know what to do.

2)

ellijacket wrote:1) Why are you using a machine and not going with surgery? Doc told me I had a 40% chance with surgery of getting better and that a second more severe surgery (jaw-breaking involved) would push it to 80%. I don't want a broken jaw but was wondering if it might be worth it.

A 40% chance of success with surgery under general anaesthetic which carries a moderate risk, pain and recover time compared to 100% success (as shown during my titration), no risk, no pain and no recovery time. Seemed that the numbers spoke for themselves.

2)Are my above results really bad? I do wake up sluggish and don't always feel sharp. I never just all asleep doing something but if I sit down with a book I might.

Yep, not good. Every apnea will cause a jolt of adreniline, boosting your blood pressure and putting stress on your heart. This increases your risks of heart attacks, strokes and aneurisms even if you have no underlying heart disease.

Every time you have an apnea your oxygen saturation falls which puts stress on all your organs but especially your heart. It also kills brain cells.

I don't know about you, but I don't have any to spare!

The apneas cause arousals -- you wake up at least partially (see the adreniline shock above). This disrupts your sleep, limiting your REM (needed to assimilate memories among other things) and Delta (stage 3/4) sleep which is to the body what REM is to the mind. Sleep deprivation (which is what is being caused) has been positively linked to type 2 diabetes, hormone imbalances that cause weight gain (and the weight gain causes worse OSA -- Obstructive Sleep Apnea) and other problems.

Memory problems, cognitive difficulties, trouble concentrating, symptoms of ADD and ADHD, cardiac arythmias, etc. have all been shown to be linked to OSA.

It will kill you! The only question is: how soon?

3) I am very upset about having to be hooked to a machine for the rest of my sleeping life and I'm not sure I can do it (I'm venting my frustration). Is it worth it? Will my quality of life be improved to where I'm glad I did it?

Well, you could live without it, but you won't live as long. The decision is yours.

I can't answer for you, but my quality of life is so much better with xPAP that I refuse to lay down without it! The phrase "as different as night and day" was used to describe it to me before I started. I can agree completely.

4) What kind of equipment should I ask for? I don't want to get stuck with some piece of junk that I can't use and if I have to do this I'm willing to pay for something good. Please advise me on what I need to tell the doctor so I can be informed when I go in.

You want a generic prescription for CPAP at a specific pressure. Then you can go to any DME or online supplier (such as https://www.cpap.com) and buy whatever you want.

I chose the GoodKnight 420E APAP as my first machine and I'm glad I did!

Thanks for your help. For some reason this whole situation has really made me despair. I was hoping a few swipes of the knife would cure me but it's more involved than that and now I don't know what to do.

No reason for despair. If there was no treatment then you'd have cause for despair!

Sure, a "quick fix" would be great. But at what cost? Too many people ignore the risks when it comes to surgery of all kinds. Although for many kinds of surgery the risk of not getting it far outweighs the risk of having it.

I consider any viable alternative (esp. when it is proven to work for me!) to be preferable to the risks of surgery. This has nothing to do with pain (I have a moderately high pain threshold) but just my natural inclination to avoid unreasonable risks.

Hang out here for a bit, research what you have and the alternatives. Check out the equipment available. And keep an open mind.

This isn't the end of your life. With treatment, you can have a life every bit as good as if you never had OSA.

Great post, WA! All I can say is "Ditto!"

ellijacket, don't look at this as the end of something (like the world as you know it....LOL), but rather as the beginning....beginning to feel better overall, beginning to be more alert, beginning to regain your energy, beginning to live again instead of just muddling through.

This therapy WORKS!!!

Ditto! Wonderful post. CPAP has made such a huge difference in my life. Be patient, and it will work for you.

I want to add my dittos to the previous responders to your post. I believe it's safe to say that very few of us (darn few) got to this condition overnight. It's going to take time to turn our lives and health around. Many experience immediate results and for many it takes longer. Many of us have a variety of other health problems that we're dealing with, too. The combination of different types of machines and masks can be quite mind-boggling for a new user (I don't like the term "Newbie"). In any case, to partially answer your question #4, try to get the most sophisticated equipment you possibly can. There are DME suppliers out there that are pushing older, simpler and outdated machines because it's more money in their pockets. Get one with some kind of data storage that will collect your nightly statistics for you and your doctors to evaluate. If they'll let you get an APAP, that would be a good option, too. Do your homework and "stick to your guns" when talking to the doctors and DME suppliers.

Best of luck,

Den

Quadruple ditto!! Absolutely great post, Bill. Should be "must reading" for anyone who has been diagnosed with OSA, but doesn't have extreme daytime symptoms and is understandably looking for ways out of starting cpap treatment.

Elli, I didn't have the utter exhaustion or fatigue or tendency to need to sleep during the day that many others have. I could function just fine. Probably about the same degree of "sleepiness" that you have. Occasionally drift off to sleep for a few minutes reading a book...that kind of thing. Didn't seem alarming to me at all. Even the drowsiness I'd have when driving on long trips didn't alarm me...heck, doesn't everyone get sleepy driving on long, boring interstates and have to pull over sometimes for a nap?

No! None of those "slightly sleepy sometimes" situations are normal. It took starting cpap to open my eyes (no pun intended) to what was really causing my very mild symptoms of OSA. There are absolutely no situations that cause me to feel the least bit sleepy in the daytime now, even with just 6 hours of sleep (always, ALWAYS, using the machine when I sleep.)

Years of untreated sleep apnea did take a toll on the old brain cells, I'm sure. Even as far back as in my twenties (I'm 60 now) I didn't have the best memory...as best I can recall.

Go ahead and get yourself onto cpap treatment. If it were me, I'd go for either the Puritan Bennett 420E autopap or the Respironics REMstar Auto with C-Flex. Be sure to get a heated humidifier. With either autopap, do get the software so you can monitor your own treatment.

Finding a mask that suits you actually is much more important to being able to "do" this kind of treatment, than the machine you select, imho. I'd ask for one of these masks: Swift, Breeze, Activa. Or..if a full face mask is needed, Ultra Mirage FF.

Immerse yourself in the posts about surgical solutions at the link at the bottom. You might decide cpap is not such a daunting idea after all... a machine/mask that one uses only while sleeping, then get up and go merrily about your business. But if you do want to consider other types of treatment, those posts will give you a better idea what to expect and what to ask any doctor that you consult about surgical methods. I personally would run, not walk, from any doctor who suggests UPPP.

For some on cpap, the feeling of being refreshed is apparent the very first morning and always thereafter. For others, it takes quite some time and a lot of "optimizing" the treatment to feel better at all. The important thing, imho, is to stop the damage that's being done every sleeping moment with untreated OSA...even "mild" OSA.

Good luck!

LINKS to surgery, turbinates, Pillar, TAP experiences

rested gal wrote:Quadruple ditto!! Absolutely great post, Bill. Should be "must reading" for anyone who has been diagnosed with OSA, but doesn't have extreme daytime symptoms and is understandably looking for ways out of starting cpap treatment.

Thanks! It must be the really great sleep I've been getting using my 420E APAP.

What I wrote was an abridged excerpt from a couple of very long messages I composed for friends and family describing what I have (OSA) and what it does. It really opened their eyes to the point that one friend has an appointment with my sleep doc this very afternoon to see if he has OSA (it seems like it) and whether it is related to his cardiac problems (a very high probability).

This apointment could save his life!

The point is, you might not have a lot of the symptoms now, but you could develop them after more sleep deprivation. In addition to the things Bill listed, there is also depression, low thyroid, erectile dysfunction (for the guys) and low libido (lack of desire). Good news is almost all of the conditions caused by Sleep Apnea are reversible with CPAP treatment.

One correction to what Bill said, however. If your doctor gives you a prescription for a CPAP, a DME will only give you a CPAP, not an APAP. However, you can order online any machine you want with the CPAP prescription. Only difference is what you would have to put out in copay with insurance versus what you pay online. Sometimes one is much higher than the other, sometimes about the same. Chances are you can get the equipment a lot faster buying online than through a Durable Medical equipment provider (DME). And with BillMyInsurance, you have the best of both.

The majority of car-related deaths are caused by drowsy driving. Why else do you think they put so many of the pavement drop-offs on some roads, and corrugated strips on the edge of the Interstates to wake you up?

I appreciate all the advice. I am sleepy enough sometimes that I wish I was more alert. My job requires constant concentration and that's hard sometimes. I haven't had any issues with my driving or anything.

I'm really interested in improving my overall quality of life. I have been dropping weight and eating right. Trying to exercise 5 days a week, etc. The sleep thing is just another step in that direction.

I'll take the machine info with me and be sure to get my doctor to get on board with it.

Thanks.

Janelle wrote:The point is, you might not have a lot of the symptoms now, but you could develop them after more sleep deprivation. In addition to the things Bill listed, there is also depression, low thyroid, erectile dysfunction (for the guys) and low libido (lack of desire).

My list wasn't intended to be exhaustive, and even with Janelle's additions we haven't hit all the problems this causes!

I'm going to be extremely brave and admit in public that one effect I had was low libido. It wasn't that I had no desire; it was that I desired sleep more! This hadn't affected my marriage ... yet ... that I could tell ... but my very patient, loving wife had commented on it more than once. Not a good sign!

Without going into any details (I don't want to be booted off the site) let's just say that there has been some excellent improvement seen in the past 2+ weeks of treatment.

Good news is almost all of the conditions caused by Sleep Apnea are reversible with CPAP treatment.

Yes, I should have noted that. It now appears that even gray cell loss is reversible given time.

One correction to what Bill said, however. If your doctor gives you a prescription for a CPAP, a DME will only give you a CPAP, not an APAP.

Oh, right. I forgot about that. Thanks for the clarification.

I'll put in my opinion about the surgery. I had the ova..................., what ever its called, but the osa returned.So I don't personally think its worth it. I also agree that you should go for an Auto. Whatever you have to do. It can do everything, from varying pressures as needed, straight pressure, as well as downloadable info on your computer so you can see whats going on and make adjustments as needed.It may take a battle and maybe some money out of pocket, but try like heck for one. You best chance is to get educated about the Auto so you can defend your choice. Also remember that things may change with you thru the years, and the auto can change along with you. good luck.

At first having the thought of using the machine for the rest of my life was very hard to deal with. I just started on CPAP treatment in April of this year. My insurance company, thankful had a compliance program that forced to me to stick it out. Modem attached to phone line monitor compliance or they would not purchase machine. At first I had many sleepiness nights . But after a few weeks of fighting the battle I started to see results. The headaches that I grown almost used to were gone. The stress level in my life went down. All because the first time in many years I was getting the right kind of sleep. I feel like I have been giving a second chance of living. Believe or not thanks to insurance company that doesn't want to pay for machines. The compliance period is suppose to last 6 months. They purchase my machine after the third month. It is small price to pay for the quality of life you have been missing.
Good luck to all and sleep well.
Chris

Another side effect I keep forgetting about is my acid reflux (GERD) has totally disappeared! I'd have it almost every night prior to treatment. Sometimes I'd be good for a few nights, but I don't think I've ever gone a even a week without suffering in the past few years.

In the past 18 days or so of treatment I haven't had one episode or had to use an acid reducer (except for a couple of meals that disagreed with me through the day) even once.

It sure feels good!

I just want to thank everyone for sharing their knowledge and encouragement. Even though I knew this was a severe problem I was so afraid to get a machine that I thought about just dropping the whole thing. Your support has helped me a lot. I'm still not happy about it but I feel better about it and from your responses I'm sure when I wake up feeling rested that I know it will be worth it.

Thanks for letting me vent.

ellijacket wrote:Thanks for letting me vent.

That's what we're here for; to help each other.

Drop by once in a while and let us know how you are progressing.