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[Equipment] Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
#1
Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
I have been going through the rounds of reading documentation from my provider to get approval for MMA surgery. 
My AHI according to a recent titration study and a review of OSCAR data is reporting very low (0-2 AHI) but I experience severe exhaustion and symptoms of headaches, brain fog, nasal/throat swelling, etc. 

Without CPAP, I have 80+ events per hour which places me in the Severe category. 
  • MyAir reports that in the last 90 days my 95% leak rate is 40 L/min
  • OSCAR reports in the last 30 days my 95% leak rate is 45.6 L/min
  • I am near 100% compliant with CPAP for 20 yrs but have had two nasal surgeries to tolerate CPAP and am having trouble with it (severe symptoms, headaches, nasal and throat irritation, etc.)
  • I have tried 5 masks and most do not fit my nose or seal. This includes at least two different full face masks. 
  • I have tried everything under the sun with chin straps 
  • MyAir has always told me that my leaks are unacceptable. 
Does anyone have any ideas on why my AHI is recording so low, yet I am highly symptomatic? Any tips on getting support from my sleep doctor to make sure this leak rate is documented?
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#2
RE: Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
You seem to be using CPAP, and we don't know what level of EPR you are using. Post a chart and we can give you an opinion, but I suspec if you are trying to treat upper airway restriction, that bilevel therapy or using EPR on your Autoset might be less painful and more effective than MMA. In any event, give us something to work with. Give me an Oscar chart.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
you should see a board certified pulmonologist that specializes in sleep medicine about your sleep apnea. ENT's are too quick to cut. Always if anybody mentions cutting get a second opinion at least.
First Diagnosed July 1990

MSgt (E-7) USAF (Medic)
Retired 1968-1990
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#4
RE: Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
Thanks for reading, and thanks in advance for the support and kindness! 


Sorry I didn't post this earlier. I tried to follow the guidance in the Wiki as closely as possible. Last night's results Average 95% leak rate is between 30 and 65 the last six months. A few weeks ago, she took me up from 11cm to 14cm. 

I am decently read on the outcomes associated with MMA and didn't start there by any means. To the other question, I am seeing a Board certified sleep specialist who only works on sleep medicine. I have seen an ENT for both nasal procedures in the past, and again in 2018 to try and deal with CPAP challenges independently of my sleep doctor(s.) The nasal surgeries definitely helped me tolerate CPAP but I feel that now my obstruction is with the regressed maxilla and throat areas. When I got a look at the CT scan of my upper jaw, saw the underbite, and how crowded my throat was, it became very obvious where the obstruction is. I have seen two oral/maxillofacial surgeons and both agree that I'm a  candidate. 

i have already tried EPR values 1, 2, and 3 and actually found that I subjectively slept worse with it and therefore don't use it much these days. Leaks are bad even at lower pressures. I am to the point where I've talked to the doc about quitting CPAP altogether. I understand the psychology of it well, and want to be 100% compliant in every way, but the way my nose and jaw are shaped, even after trying 5+ masks, Swift FX is the only one that even seals, despite following a strict replacement and cleaning schedule. I'm at my wits end, or I wouldn't even consider something as invasive as MMA.

I am receptive to any suggestions, and hoping for confirmation that my doctor writing "leaks are normal" in my chart cannot be correct.


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#5
RE: Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
I am waiting for the experts to jump in here.  My understanding of "large leaks" is that, by definition, the leak is more than the machine can compensate for.  Yet, your pressure does not seem to rise with these leaks. That is very confusing.  What masks have you tried.  I tried many more than five before I found one that was comfortable and that would provide a good seal.  I found that similar masks worked completely differently for me.  For example, the Amara View was a complete disaster for me but the Resmed F30 which is similar is the one that really works for me.  I am interested in the responses from the experts here.  Good luck.
Ray
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#6
RE: Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
A couple of things
first the obvious, large leaks, these are mostly mouth leaks with some mask leaks, you need to get these under better control, read the Mask Primer, especially the section on Mouth breathing., see my signature.  
Because your 'numbers' are good, you are not experiencing large number of 'events' This is not impacting you as much as someone who is having a lot of events.  This is because your pap does not have to react to a bunch of events.  That said do definitely work on the leaks.

Your flow rate looks grassy which implies that you could have quite a few unreported flow limits, a zoomed graph with a 2-3 minute view will give us a better idea.

You are not using EPR.  EPR typically provides a lower pressure which helps with leaks and definitely treats flow limits. 

I suggest 
Auto mode (it will help us to dial you in as we see what your pap wants to do.)
Min Pressure = 10 (Without a lot of events we would want to bring your pressure down, this too will help with leaks.)
Max Pressure = 15 ( A little above your current pressure to see if your autoset thinks you need it)
EPR = 2, Full Time. (This lowers the average pressure impacting leaks, and treats flow limits and other obstructive events.)
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
(09-08-2020, 09:57 AM)raylock1 Wrote: I am waiting for the experts to jump in here.  My understanding of "large leaks" is that, by definition, the leak is more than the machine can compensate for.  Yet, your pressure does not seem to rise with these leaks.
Ray

The machine is in CPAP mode. Even in Autoset mode pressure generally does not rise for leaks, however flow will increase to attempt to maintain pressure.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
Hi Jenk2k

Best to follow the advice about machine settings of the seniors on this Forum, but I will add this from my own experience so far:

This is what I started off with:
   

Note the AHI isn't bad but the sleep disruptions from the leaks are terrible: note the increased pulse rate at termination of many of the mouth leaks: PR Events reported in OSCAR as 188 for the night: waking up feeling exhausted, and this  was on xPAP!

This is a sample of my leak rate these days:
   

PR changes only 37.

Achieved with Neck Collar and Partial Mouth Taping this works for me.

I too am considering nasal/ENT surgery but only as a last resort. Risks/complications/failed surgery are irreversible, so by nature I am ultra conservative.

I am sure you have found many of the threads here on mouth taping, here is another
http://www.apneaboard.com/forums/Thread-Brands-types-of-tape-for-mouth-taping

see post #33 in case it gives you something else to consider if you have not already.

Also I am responding to Bonjour's advice about EPR in this post:

http://www.apneaboard.com/forums/Thread-...vs-For-Her
and will go back to EPR = 3 going forward.

I will add one more thing in case it helps: I have looked at some of my data from the last months in Excel and can confirm the trend of less leak rates the higher the EPR: I hope to be able to add to this data over the next few months.


.pdf   EPR vs Leak Trend so far.pdf (Size: 72.11 KB / Downloads: 2)

All the best with what you decide going forward.
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#9
RE: Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
Thanks to all for the insights I have turned EPR on and after reading tonights responses, will crank it up from 2 to 3.

I will hold off on Autopap until my next follow up with sleep doc. I am trying to make sure we show adequate tweaking under direction of doctor to make sure insurance doesn't try to hold anything against me. These people are really aggressive. I mentioned to the doc that I used CBD on occasion for insomnia. They wrote Marijuana in my chart as if I use depressants ( I do not ) and the insurance company wrote "YOU USE MARIJUANA" as a denial reason. 

That said, in the past when I used Autopap my brain found the constant changes in pressure very confusing and I was generally (subjectively) far worse off.  (for about a year in 2010-2011) I went back to my records and found that they tried me on the airsense autoset in 2018. I brought my card in at that time because I was very symptomatic and they changed it back to single pressure. I'm of course willing to try, and now armed with a ton of great info on how to read using OSCAR, I feel more armed woth tools than ever. 

I've attached a screenshot of 3 minutes of data during which it detected a few events. Hope this is what you were looking for.

RE: nasal or other throat related surgeries, I had an interesting convo with one of the surgeons I'm working with. He felt that MMA was a very strong surgery for OSA, and that if you still needed other procedures afterwards, the procedures are much more effective after MMA has been performed. He also said that he gets the apnea under 5 AHI for 90-95% of patients. I realize it looks like my AHI is pretty low, but I am so symptomatic, I am convinced that there must be unrecorded events on my machine. I feel terrible every day and I still recall what it was like to not feel terrible.


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#10
RE: Trying to get insurance appvl for MMA surgery, sleep doctor saying my leaks "normal"
Jenk2K, the zoomed view is much longer than 3 minutes. Could you zoom in further until you see just 3 minutes from end to end on your graphs?

I would hate to see you have surgery before you optimize your PAP therapy. I'm sorry you feel you can't change your pressure settings without repercussions from your insurance company. Do you think your doctor would work with you collaboratively on trying some changes?

The leaks are a big problem. Here are some ideas:

1. Tongue position. Try putting the tip of your tongue behind your upper front teeth. Then position the main part of your tongue up against your upper palate. Finally, give a little suck or swallow to create a bit of suction. You should now be able to open your mouth while breathing entirely through your nose. Practice this during the day, and see if you can get it grooved in deeply enough to help while you are asleep at night. For some people, this is really all it takes to avoid mouth leaks.

2. Collar. If your jaw tends to drop down during the night, pulling your mouth open, then a soft cervical collar, or a firmer snore collar, can be a big boon. More here:
http://www.apneaboard.com/wiki/index.php...cal_Collar

3. Chin strap. Most straps pull the lower jaw back and so are counterproductive. But some forum members have been having good results with the Knightbridge Dual Strap, which pulls straight up.

4. Tape. Some people (including me) rely on tape to keep the lips from opening. (I can't rely entirely on the tongue thing.) When the lips open, all too often that eventually leads to a noisy and disruptive mouth leak. To see whether tape would be feasible for you, I recommend that you invest in a box of Somnifix strips. They are very gentle on the skin but hold very well. Be sure to curl your lips inward per instructions before placing the strip. If these work for you, then you can experiment with lower-cost options.

Note about tape: Some people avoid it, for two reasons. (1) If you suddenly need to vomit in the night, the tape could lead to your aspirating some vomitus, which would be bad. However, you can sacrifice one strip to see for yourself how well you can pull you mouth open in an emergency using only your jaw muscles. (2) If there is a power failure and your machine goes off while you're sleeping, you won't be able to do the natural thing and open your mouth to breathe. As for that, out of an abundance of caution, I've also put a circuit alarm in a plug on the same circuit as my machine. It will wake me up immediately if I lose power to the machine.
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