Persistent sleep apnea problems

by Noreen
(New Hampshire)

Noreen 2009

Noreen 2009

I have had sleep apnea for many years now. I am, however, an atypical patient.


I am not obese. I am 49 yrs. old, 5'4" tall, weigh 140 lbs., and do not have a large neck as do some patients.

My doctors have done 4 surgical procedures. I've tried CPAP,Bi PAP, and an oral appliance and have not received any significant benefit from any of these efforts.

The procedures tried so far include correction of a deviated septum, a UVPP, a UPPP (removal of the rest of the uvula and some soft palate tissue), and a Hyoid Advancement.

As of this past sleep study, my numbers are worse than ever before, and worse after all of these procedures. I am about at my wits end with this.

What else can I do to alleviate the suffering and daily impact to my life that this condition has had? I need some help before something tragic occurs to me as a result of having sleep apnea. One of my doctors believes it is obstructive apnea, while another believes it is central apnea causing the trouble.

I have seen doctors in 5 states for this condition, and I am still not relieved from symptoms. I am the only member of my immediate family to NOT have a heart attack yet, and I'd like to keep it that way! :-)

Please help with advice, direction to a specialist, or whatever you can so I can be around to see my kids grown up and try to have a reasonably normal life.

Thank you so much for any assistance you can provide.

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


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Jan 14, 2011
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nice photo:)
by: Jank

Noreen, there's a possible explanation for the discrepancies, and if you can get someone who knows what the heck they are doing to understand which applies in your case and prescribe APPROPRIATE treatment, you may get success.

So don't give up until you do!

Jan 14, 2011
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meds
by: Solvepart

I hate to recommend meds, but klonopin has helped me to feel much more normal during the day.

Maybe get your doctor to give you the half milligram tabs and go from there.

And keep trying to solve your apnea issues.

Blessings.

Jan 14, 2011
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Persistent Apnea Issues
by: Noreen

My thanks to those of you who have taken the time to respond to my earlier post about my struggles with sleep apnea. In response to some of the questions:

Yes, I have been to sleep centers at Stanford in CA, also to the sleep center run by Dr. Sam Mickelson in Atlanta, GA, and also to sleep centers here in NH, and to specialists in Boston, and in VT. The results of my sleep studies showed most recently that I experienced both obstructive and central apnea episodes during the night of the study. The specialist in Boston did a CT scan of my throat while lying down and he claims that the airway is open more than that of a "normal" subject so he then concluded that the cause shouldn't be obstructive. But of course the study just prior to that indicated otherwise.

Does anybody out there know of a well qualified doctor in the US that treats patients who have failed other therapies, and who can finally identify the reason(s) for my sleep apnea, and who can provide me with some viable options for getting a healthy night's rest?

Again, my thanks to all who reply.

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