(05-29-2015 10:30 AM)azone Wrote: I'm at my wits end trying to get a real diagnosis for my sleep disorder. I actually realize now I've had it my whole life since I was a tired kid with chest pains. I will describe the history below and then where I'm at now. Maybe someone with similar experience can offer encouragement or share their story on what they did.
Without Writing a long epistle 'bout my experiences, let me say my story echos yours in many respects. I too think I've had this problem from an early age.
I believe a mistake made frequently by many doctors is to consider all respiratory problems coming under the heading of SDB (sleep disordered breathing) to be caused by OSA.
Which is certainly untrue in my case because night after night my Sleepyhead charts indicate no OSA, no CSA and a consistent AHI of <5. Yet I feel lousy & constantly tired. Like you, I've seen many doctors, sleep specialists, ENT's, & respiratory specialists. Other specialists include a Cranilal/Maxillomandibular surgeon. (consultation included special x-rays and scans) - nothing found. All docs have said the same, "You're under AHI 5, your SA is treated & you're good to go, Best of British luck!"
The ENT surgeon put a miniature camera into my upper airway via my nose & on the monitor I could see exactly what was happening. As I breathed out, the base of my tongue would move backwards restricting the air flow, but not blocking it.
Now here are my thoughts which I hope will help you, & raise your spirits a bit.
AHI is an index of the number of events one has per hour, & since this index is made up of the number of OSA events plus the number of hypopnea events, one can see that if there were no OA's then the Hyp's would be more severe. Also it doesn't account for the length of time of each event. Thus hypopnea events can & do last for as long as 30 minutes or more. In SH, these are easily seen by the plateau top of each AHI wave form.
It could therefore be the hypothetical case that one event lasting one hour would return an AHI of 1, however the effect on the patient would be devastating.
It is not unusual for me to have 3 or 4, 30min hyp's on the one night.
So I like you go untreated & the docs are left scratching their collective heads. Not much good to either of us.
WHAT THEN IS THE SOLUTION?
It obvious that the airway has to be kept open and xPAP has in most patients been effective, but there are some patients for whom PAP is not the whole solution, although it can form part of the solution.
Clearly some intervention in addition to PAP is indicated.
The options (in descending affordable order) are...
1. Robotic resection of the base of the tongue
1a.Maxillomandibular re-alignment (if more suitable for patient).
2. Mandibular advancement splint (MAS)
3. Mandibular advancement device (MAD)
4. Tongue stabilizing device (TSD)
#1. above will require the patient to have health insurance. It costs $5000 just to turn the machine on, and there's the possibility of unplanned contingencies that would push up the cost. Then there's the operation team & theater fees as well. Possible cost $10,000.
1a. Would be covered by Medicare I think with gap payment.
2. MAS Made, supplied & fitted by a dentists - possible cost $5,000
The rest are inexpensive. #3. being a cheap "Boil & bite" affair
#4. TSD less than $50.
Of the above, I believe the TSD is worth a trial and have ordered one from the US for $AU49. Will report after I have given it a fair trial.
Another diagnostic investigation suggested by my ENT is a "Sleep Endoscopy" in which the patient is induced to sleep & the miniature camera once again used to inspect the airway. This, I'm told can also be expensive and sometimes inconclusive.
In the end it would seem ourselves & this board are our best resources. The folk posting really have good advice & information we can all benefit from. Central apneas can be scored by a number of artifacts & thus unless confirmed by clear airway events, may not be of much significance. So keep scanning posts here & keep trying to find a solution. One thing I'm sure of is that every one is different & requires differing solutions. I sincerely hope you find yours. Good luck.
Sleepyhead Chart 27/04/16