Body in decline from Sleep Apnea / Surgery denial by Insurance

[Fourtay]

Hello,
I was diagnosed with sleep apnea in 2015. The symptoms started in late 2014 / early 2015.

I used to be able to stay up all night but I can't do that anymore since the sleep apnea diagnosis in 2015. My body feels devastated if I try and stay up an additional 3 hours from normal bedtime. I used to play poker quite a bit and we would play routinely until 2,3,4 AM on the weekends.
I have noticed that I get fatigued easier, my vitality seems to have gone. If I miss a meal, my body becomes worn down very quickly. Occasionally I used to be able to drink 1 or 2 beers in a day and not feel any negative hangover type effects from it. Now if I try and drink 1 or 2 beers in a day it completely ruins me a few hours later. I used to have a maximum of 1-2 beers a month. Now I can't drink anything as it is too hard on my body for some reason.

I am currently using CPAP and trying to tune it to work but still struggling with nightmare wakeups with sweat / high heart rate /aerophagia.

Around the time the apnea started, I started to have heart palpitations. I seen a cardiologist, went into the hospital a few times. Wore the Holter monitor a few times, did the echocardiogram, they said I'm fine.
Then this year, I tried to ride my bike quickly and I started to have painful palpitations. The doctor said just to slow down when I exercise.


Doctors have said I need jaw surgery to align my bite, expand my upper jaw, and move both my lower and upper jaws forward. However, my insurance company, Anthem (ObamaCare /Marketplace) will not authorize a jaw surgery unless I do a UPPP or genioglossus advancement/hyoid myotomy with suspension first, and if that surgery doesn't work then they will pay for jaw surgery.
I have spoken with multiple oral surgeons and sleep doctors about this jaw advancement surgery. I am getting mixed feedback as airway size from X-rays taken indicates a large airway. Some doctors say they wouldn't recommend the jaw surgery as my airway is large and they wouldn't suspect it would help to move the jaws forward thus by moving the tongue forward and further increase the airway size. Other doctors say it would benefit me and the x-ray was taken when I was awake, not asleep with apnea's occurring so it is hard to tell if my airway is simply collapsing while asleep. I wanted to get another in-lab sleep study done to determine if I am suffering from primarily OSA or central apnea and see if a jaw surgery would benefit me if the finding was primarily OSA opposed to central where the surgery wouldn't help me. The doctor said to do a take-home study first, that they're quite good now. I did that and it did not detect the central apneas as my previous in-lab study from 2015 did detect. I asked to do an in-lab study but my Nurse Practitioner says the insurance company only allows for 1 study per year, and there's nothing he can do as my machine AHI and epsworth sleepiness score are good and that the take-home study is substantially less expensive than the in-lab version.

Currently, I'm in braces for the past 2.5 years awaiting the approval of the jaw surgery, the insurance company just denied me the other day, not sure what to do. Only other options are to investigate the 3 surgeries outlined by anthem, quit my job to find one with insurance, or stay in braces until the next open enrollment period to where I could switch insurance companies and find a new surgeon who would accept whatever insurance I have.

I have a low functioning nose as far as air movement. I can only get about 25% air from it. I have an enlarged turbinate and a slightly deviated septum. I've had a deviated septum surgery that was unsuccessful and a turbinate reductions surgery. My sleep doctor suggested a rhinoplasty as when she pressed against my cheeks next to my nose, my nasal airflow improved. I just haven't followed up on the nasal surgery front as I've been focused on the jaw surgery as the cure-all.

Thank you for reading my rant. Just wanted to get it out and talk with someone about it.

[sleepy-programmer]

I am sorry friend. I'm similarly evaluating this type of advancement jaw surgery (MMA) myself but … here's the thing. I think a one-and-done cure-all is tempting but doesn't necessarily exist. Especially if you have doctors who say they don't think the MMA surgery will help. It's permanent. It can go wrong. It might not work. We have to be so, so, so completely sure about this before we bite that bullet. Maybe it does happen and it cures everything. I wish and hope to god it could for me. But if it can't, or it doesn't, I have to accept this. And it's okay.

How long have you been using the CPAP machine? How has your sleep been since you started? I'm sure one of the regulars will come by soon with more to say. Welcome!

[zoocrewphoto]

I don't know much about the jaw surgery, but the UPPP surgery is not a good one to get. It is very painful, often causes permanent problems, and rarely helps for more than a year or two. Also, they define success as a 50% reduction in events. most people don't feel really good unless down to an ahi of 2 or less. You can do that with cpap, but with anything else, you won't get those results. You could start with 80 events per hour, get down to 40 events per hour, and the doctor would call it a success, while you would still be severe.

Instead, how about we help you master the cpap? Most people have trouble starting off because the doctors don't know much about who to use the machine or adjust the settings. The providers (DMEs) really only care about payment. We can help you get your settings more comfortable and more therapeutic for you. you may not need any surgery to get success.

Tells us about your machine, mask, and settings. Also, what problems you are having.

Also, check out the top post for newbies and download sleepyhead. post some graphs of a typical night, and the experts here will help you dial in to better settings.

[Fourtay]

Thank you.
I have been on CPAP for about 3.75 years. At first, they put me on auto adjusting CPAP 4-20 pressure. Then they adjusted or we adjusted I should say, to 9.8 constant pressure CPAP. That's where I'm at now. Still fighting with aerophagia and waking up many times during the night. Before 2015 and sleep apnea I could sleep 9 hours every night and not wake up one time. Now it's like 5 times minimum.

I get wake-ups where its a nightmare and I'm sweating with high heart-rate and confusion upon awakening.
I also get a similar awakening experience where I'll wake up 1000% confused as to where I am or waking up 100% positive there is someone in the house trying to kill me. Good thing I don't own any firearms or I might have gotten into trouble by now lol. On one of the most recent wake-ups I had, I walked into the other room and just sat on a chair in my underwear for a good 10 min to get my bearings straight and calm down.

I've also noticed that my blood pressure seems to have increased lately, my feet get heavy and blueish when I brush my teeth, or If I go into the fetal position the blood pressure is too much. I think I just need to exercise more and lose weight. I've gained 25 lbs since quitting smoking in 2015. from 145 lbs to 170 5'10"

[zoocrewphoto]

Thank you.
I have been on CPAP for about 3.75 years. At first, they put me on auto adjusting CPAP 4-20 pressure. Then they adjusted or we adjusted I should say, to 9.8 constant pressure CPAP. That's where I'm at now. Still fighting with aerophagia and waking up many times during the night. Before 2015 and sleep apnea I could sleep 9 hours every night and not wake up one time. Now it's like 5 times minimum.

I get wake-ups where its a nightmare and I'm sweating with high heart-rate and confusion upon awakening.
I also get a similar awakening experience where I'll wake up 1000% confused as to where I am or waking up 100% positive there is someone in the house trying to kill me. Good thing I don't own any firearms or I might have gotten into trouble by now lol. On one of the most recent wake-ups I had, I walked into the other room and just sat on a chair in my underwear for a good 10 min to get my bearings straight and calm down.

I've also noticed that my blood pressure seems to have increased lately, my feet get heavy and blueish when I brush my teeth, or If I go into the fetal position the blood pressure is too much. I think I just need to exercise more and lose weight. I've gained 25 lbs since quitting smoking in 2015. from 145 lbs to 170 5'10"

4-20 is pretty much guaranteed failure for anybody. Many doctors don't realize that the machine doesn't remember what worked best and keep it there. It goes up and down, and can often be too slow to get to where it needs to be.

If you post some graphs, we can help you get better settings. We need to see how many events you are still having at 9.8, if they are clustered, long, what type, etc.

You may do better with a range that starts lower than 9.8 and only goes up when needed. But clearly not starting at 4 either. But we need to see what is happening.

[Fourtay]

Tells us about your machine, mask, and settings. Also, what problems you are having.

Also, check out the top post for newbies and download sleepyhead. post some graphs of a typical night, and the experts here will help you dial in to better settings.

I have a ResMed air sense 10 Autoset currently set to CPAP mode 9.8 pressure.

I use an DreamWear Full Face mask

I will download sleepyhead and see if I can post some graphs.

Thanks!

[Hannibal 2]

Tells us about your machine, mask, and settings. Also, what problems you are having.

Also, check out the top post for newbies and download sleepyhead. post some graphs of a typical night, and the experts here will help you dial in to better settings.

I have a ResMed air sense 10 Autoset currently set to CPAP mode 9.8 pressure.

I use an DreamWear Full Face mask

I will download sleepyhead and see if I can post some graphs.

Thanks!

Better if you fill in your equipment profile so that it appears at the bottom of your posts, otherwise you'll keep getting asked for this. Yes, definitely get some sleepyhead graphs posted.

It does sound like you need some advice with your settings but could I also ask your age? It doesn't matter how good your therapy is, as we get older most of us are less tolerant to lack of sleep and too much alcohol. I have optimized my APAP therapy and it's working well for me, but I need to get at least 7 hours sleep, and if I consumed the amount of alcohol that I used to, it will take days for the side effects to wear off.

Welcome to the forum and good luck with getting things sorted.

[Muse-Inc]

IF I were you, I would trial taking magnesium citrate or magnesium tarate (not mag oxide, it's just a laxative). It's not in our water anymore and estimates are that 75% of us are deficient (unless you eat a ton of green leafy veggies). Palpitations are one deficiency symptom. Magnesium is the third most abundant mineral in our body and involved in >300 reactions. It helps smooth tissues relax including the heart, the lining of blood vessels (helps blood vessels expand reducing BP), and the aveloi in the lungs. The RDA for men is just under 400 mgms/day so taking a 200 mgm capsule with breakfast and dinner oughta be sufficient or add 1 at lunch to see if it helps in a shorter period of time.

[metsfan302]

I think I replied to another thread you started. It had a copy of your sleep study. It showed about equal number of central apnea events to obstructive. I myself was on Cpap for 3 years or so, till I learned to read and post my charts and realized I needed to be on a Bi-Pap/ well ASV Machine for my central and obstructive apneas. The cpap was not doing anything for my centrals

[chunkyfrog]

IF there were a surgery that cured apnea,
EVERY insurance company would be wise to cover it.

[babydinosnoreless]

Doctors have said I need jaw surgery to align my bite, expand my upper jaw, and move both my lower and upper jaws forward. However, my insurance company, Anthem (ObamaCare /Marketplace) will not authorize a jaw surgery unless I do a UPPP or genioglossus advancement/hyoid myotomy with suspension first, and if that surgery doesn't work then they will pay for jaw surgery.
I have spoken with multiple oral surgeons and sleep doctors about this jaw advancement surgery. I am getting mixed feedback as airway size from X-rays taken indicates a large airway. Some doctors say they wouldn't recommend the jaw surgery as my airway is large and they wouldn't suspect it would help to move the jaws forward thus by moving the tongue forward and further increase the airway size. Other doctors say it would benefit me and the x-ray was taken when I was awake, not asleep with apnea's occurring so it is hard to tell if my airway is simply collapsing while asleep. I wanted to get another in-lab sleep study done to determine if I am suffering from primarily OSA or central apnea and see if a jaw surgery would benefit me if the finding was primarily OSA opposed to central where the surgery wouldn't help me. The doctor said to do a take-home study first, that they're quite good now. I did that and it did not detect the central apneas as my previous in-lab study from 2015 did detect. I asked to do an in-lab study but my Nurse Practitioner says the insurance company only allows for 1 study per year, and there's nothing he can do as my machine AHI and epsworth sleepiness score are good and that the take-home study is substantially less expensive than the in-lab version.

Currently, I'm in braces for the past 2.5 years awaiting the approval of the jaw surgery, the insurance company just denied me the other day, not sure what to do. Only other options are to investigate the 3 surgeries outlined by anthem, quit my job to find one with insurance, or stay in braces until the next open enrollment period to where I could switch insurance companies and find a new surgeon who would accept whatever insurance I have.

I have a low functioning nose as far as air movement. I can only get about 25% air from it. I have an enlarged turbinate and a slightly deviated septum. I've had a deviated septum surgery that was unsuccessful and a turbinate reductions surgery. My sleep doctor suggested a rhinoplasty as when she pressed against my cheeks next to my nose, my nasal airflow improved. I just haven't followed up on the nasal surgery front as I've been focused on the jaw surgery as the cure-all.

Thank you for reading my rant. Just wanted to get it out and talk with someone about it.

Smh jaw surgery to fix sleep apnea. You are the second person to mention this lately. I've had jaw surgery. I was a young teen. They broke my jaw moved it forwared and wired it together to fix my bite. It was awful.

I woke up with a tube down my nose and them telling me you can't puke your mouth is wired shut if you puke we will have to do it all over again. But I was gagging a choking on the tube. I will never know how I didn't manage to puke and to this day anesthesia of any kind makes me puke when waking up from it. My jaw was wired shut so I couldn't eat, brush my teeth on the inside or talk very well.

The surgery happened at the end of summer so now imagine going to the first day back at school like that. Oh how I cried. Embarassing, painful, the worst experience of my life to this day! That doesn't even count not being able to eat. I lost so much weight and I was skinny to start with I looked like a skeleton in days. My parents tried blending stuff for me but it was horrible and nothing tasted good. Remember with your jaw wired shut you can't brush the inside of your teeth so your mouth is gross and disgusting.

It was a horrible and painful experience and guess what ? Fast forward 50 years I woke up with heart palpatations and blood pressure over 200. My husband drove me to the er. The doc said I think you have sleep apnea. Probably have had it a long time. I've been on blood pressure medicine since my 30's. I havent dreamed in decades till now. My sleep study showed I was getting zero rem sleep. The follow up tritation (on a different night) showed me only able to achieve it at very high pressures. I was told it was an expensive bilevel machine and my insurance wouldn't pay for it.

So another year later after a move and a different insurance company I finally got a machine. They put me on an auto bilevel machine and tied its little hands by setting it at a fixed pressure. I was ready to give up. Who could sleep with that pressure? The mask was leaking and making farting noises which was waking my husband up also. Thank goodness I found this site and pugsy and paleride and zonker and okie bipap, lsat and more, taught me how to use sleephead and how to change my own pressure based on the results. Pugsy helped me to find a mask that works for me.

I am finally sleeping, dreaming for the first time in decades. I've lost over 20 pounds I have more energy, feel better. It took a while. It didn't happen overnight. Surgery is not a cure all. The machine is not a cure either. But its better than anything else out there. Stick with it.

[chunkyfrog]

IF there were a surgery that cured apnea,
EVERY insurance company would be wise to cover it.
Surgery for profit. Sorry they went after you.

[Okie bipap]

I have not had jaw surgery, but I have had a broken jaw. It is very painful, and recovery is miserable. If your proposed surgery is any thing like a broken jaw, I would advise against it. I broke my jaw in a fight when I was young and stupid. I entered the hospital on Monday, went to surgery on Wednesday morning. I was kept heavily doped and sedated until Friday morning when they installed the first bands. I was then doped up again for at least 24 hours. During the surgery, they put stainless steel wires through the gums and around the roots of the teeth. They used the wires to connect to a metal bridge on the upper gums and the lower gums. Small rubber bands were placed on the bridges to hold every thing in place until my jaw healed. The bands had to be changed every week because they lost their elasticity. At the end of six weeks, they removed the bridges and wires. Since they would have had to numb the entire mouth, which they would not do, they wires were removed without any sort of sedative. They would simply grip one end of the wire, then give it a very quick tug which removed it. Each wire was an intense, sharp pain for about a second, then it went away. This was over fifty years ago, but I doubt if things have changed much since then. Before you decide to have any type of jaw realignment surgery, ask about your recovery and how the jaw will be stabilized while it heals.

[Goofproof]

Hello,
I was diagnosed with sleep apnea in 2015. The symptoms started in late 2014 / early 2015.

I used to be able to stay up all night but I can't do that anymore since the sleep apnea diagnosis in 2015. My body feels devastated if I try and stay up an additional 3 hours from normal bedtime. I used to play poker quite a bit and we would play routinely until 2,3,4 AM on the weekends.
I have noticed that I get fatigued easier, my vitality seems to have gone. If I miss a meal, my body becomes worn down very quickly. Occasionally I used to be able to drink 1 or 2 beers in a day and not feel any negative hangover type effects from it. Now if I try and drink 1 or 2 beers in a day it completely ruins me a few hours later. I used to have a maximum of 1-2 beers a month. Now I can't drink anything as it is too hard on my body for some reason.

I am currently using CPAP and trying to tune it to work but still struggling with nightmare wakeups with sweat / high heart rate /aerophagia.

Around the time the apnea started, I started to have heart palpitations. I seen a cardiologist, went into the hospital a few times. Wore the Holter monitor a few times, did the echocardiogram, they said I'm fine.
Then this year, I tried to ride my bike quickly and I started to have painful palpitations. The doctor said just to slow down when I exercise.


Doctors have said I need jaw surgery to align my bite, expand my upper jaw, and move both my lower and upper jaws forward. However, my insurance company, Anthem (ObamaCare /Marketplace) will not authorize a jaw surgery unless I do a UPPP or genioglossus advancement/hyoid myotomy with suspension first, and if that surgery doesn't work then they will pay for jaw surgery.
I have spoken with multiple oral surgeons and sleep doctors about this jaw advancement surgery. I am getting mixed feedback as airway size from X-rays taken indicates a large airway. Some doctors say they wouldn't recommend the jaw surgery as my airway is large and they wouldn't suspect it would help to move the jaws forward thus by moving the tongue forward and further increase the airway size. Other doctors say it would benefit me and the x-ray was taken when I was awake, not asleep with apnea's occurring so it is hard to tell if my airway is simply collapsing while asleep. I wanted to get another in-lab sleep study done to determine if I am suffering from primarily OSA or central apnea and see if a jaw surgery would benefit me if the finding was primarily OSA opposed to central where the surgery wouldn't help me. The doctor said to do a take-home study first, that they're quite good now. I did that and it did not detect the central apneas as my previous in-lab study from 2015 did detect. I asked to do an in-lab study but my Nurse Practitioner says the insurance company only allows for 1 study per year, and there's nothing he can do as my machine AHI and epsworth sleepiness score are good and that the take-home study is substantially less expensive than the in-lab version.

Currently, I'm in braces for the past 2.5 years awaiting the approval of the jaw surgery, the insurance company just denied me the other day, not sure what to do. Only other options are to investigate the 3 surgeries outlined by anthem, quit my job to find one with insurance, or stay in braces until the next open enrollment period to where I could switch insurance companies and find a new surgeon who would accept whatever insurance I have.

I have a low functioning nose as far as air movement. I can only get about 25% air from it. I have an enlarged turbinate and a slightly deviated septum. I've had a deviated septum surgery that was unsuccessful and a turbinate reductions surgery. My sleep doctor suggested a rhinoplasty as when she pressed against my cheeks next to my nose, my nasal airflow improved. I just haven't followed up on the nasal surgery front as I've been focused on the jaw surgery as the cure-all.

Thank you for reading my rant. Just wanted to get it out and talk with someone about it.

Not using your XPAP (set up to treat you correctly), to treat your Sleep Apnea is a Game of Chance, right up your ally. Jim

[Fourtay]

The jaw advancement surgery would be no fun.
They said its about 2 weeks of pain. Only a liquid diet for 3 months if I remember correctly.
With the new surgery techniques, it allows the patient to have an open mouth after surgery so you can still brush or talk or whatnot which would be nice.
They say the Maxillary mandibular advancement surgery or MMA jaw advancement surgery, it has a very high percentage of curing OSA in patients with narrow airways. Something like 75% I believe.

However, there are many possible side effects from what the surgeons told me, possible loss of a tooth, possible permanent numbness of parts of the face. On the lower jaw they do a weird cut on the bone, it telescopes if you will in order to allow for the jaw nerve to pass through but sometimes permanent nerve damage happens.

I have included a picture of one of the surgeon's models, this is pretty much what they would be doing in my case, except for the chin bone advancement.