Answer

Your story about sleep apnea is very detailed, and I appreciate your effort to write it down. The history of your treatments reveals personal commitment and a great will to escape sleep apnea and have a wonderful life.

If other apnea patients would have your motivation and commitment to treat their sleep disorder, they would be closer to get a good night's sleep.

Some of them will be tested really hard by this awful syndrome, just like you. But I have to tell you that today there are more possibilities to treat sleep apnea than ever before.

As I said before, I appreciate the information given in your story, because I observed something interesting (personal opinion): you said that one doctor told you that he believes you have obstructive apnea, and the other believes you have central apnea. And you went to doctors in 5 states? Wow!

Noreen, I think...and please correct me if I'm wrong, that you haven't seen yet a certified sleep doctor, or a sleep center. No sleep specialist will tell you his believes about your disorder, but only the result from a sleep study can reveal with high accuracy the type of your sleep disorder and how severe it is.

I think this is a critical issue for your doctors to get right: Is the problem obstructive sleep apnea (OSA) or central sleep apnea (CSA)?

In OSA, your brain is sending signals to your lungs to breathe, but because of a collapsed upper airway, no air gets in. Hence a trach would allow you to breath at night because your brain is still sending the signals to your lungs to breathe and the air goes through the trach by-passing the collapsed upper airway.

In CSA, your brain forgets to send the signal to your lungs to breathe. The upper airway doesn't typically collapse in CSA. No signals means no breathing.

Bottom line...you need to know for sure what kind of sleep apnea you have. Then you need to know what is causing your apnea.

So, before I continue with other advices, please tell me what kind of doctors have you visited so far? It will help me understand better the quality of your sleep apnea diagnosis, and also to recommend certified sleep centers and doctors.

And I have more questions...Have you actually seen the full sleep study reports (not just the summaries)???

What you heard the doctor say and what's actually written down can be very different things. I would not go making any decisions without those sleep studies right there in front of you so you can understand if you have OSA, CSA, or mixed (also known as "complex") sleep apnea.

And what exactly have you tried in the way of CPAP/BiPAP? What problems did you have? Discomfort, poor sleep, uncontrollable leaks, no improvement in AHI, etc? Sometimes you THINK you've tried everything, but when you go back to basics and try to eliminate the factors that caused the problems, you may be surprised to find that you CAN benefit from something you've eliminated as a possibility.

I'm not saying you didn't try everything already, but it's worth revisiting some of the basic approaches with new eyes before you make a permanent hole in your neck or give up trying altogether.

Don't give up! You have a lot of experience in this, and if you take every failure as a lesson, you are closer to treat sleep apnea than ever before.

Best of luck to you. It sounds like you are in a very difficult situation.

I hope it helps. Don't be afraid to comment back.

Remy Thierry
Founder of Sleep Apnea Guide