11 Years and almost no Improvement

[squid13]

That should be his job not yours.

[babydinosnoreless]

Your leakage is bad but I am always surprised that people with AHI that is very low say they don't feel good though. I think it could be something else besides sleep apnea as to why people do not feel well, because my numbers are horrible every night, like around 10 but I feel fine most days. I can't fathom my numbers being around 1 or 2, it has never happened.

Anyways, you may need a chin strap, have you tried one? I need one with nasal pillows because I open my mouth a lot in the middle of the night. Could also be why your mouth is so dry.

I can't wear a chinstrap because it's painful. And if it were not for Cpap I can hardly even wear headphones the bigger and heavier the worse it is. I generally use earbuds. Sometimes just wearing a hat is painful. MMA has other benefits for me besides just sleep apnea that can only be accomplished through surgery. My ins will only pay for it to treat sleep apnea.

I'll try to stay on topic but after thinking about what Jas_williams said , when I do get jaw surgery that wont make my ptsd go away.

I'm willing to try it anyway. Hey if it doesn't work, I'll be sure to be on here warning everyone

I've had jaw surgery. They cut my jaw moved it forward put pins in and wired it shut for 8 weeks. It was miserable. Oh and it didn't prevent me from getting sleep apnea. I wouldn't recommend it EVER. It was the most horrible painful experience in my life and I spent 12+ hours in back labor with my first kid, that was a walk in the park compared to jaw surgery.

[squid13]

After 6 rounds of antibiotics (yes 6) it went away

I've been down the antibiotics road before. If anybody gives me antibiotics they'll take a culture first if possible so they get the right one to kill what ever it is of. Sounds like they need to get a culture if possible to make sure your getting the right antibiotic to kill it not just knock it down for awhile and then it comes back.

[sephiro499]

After 6 rounds of antibiotics (yes 6) it went away

I've been down the antibiotics road before. If anybody gives me antibiotics they'll take a culture first if possible so they get the right one to kill what ever it is off. Sounds like they need to get a culture if possible to make sure your getting the right antibiotic to kill it not just knock it down for awhile and then it comes back.

I will sum up all of my recent experiences with the amount of time I'm allowed to talk is less than one minute. My follow up with the ENT after surgery was a little over 4 minutes (yes I timed it). He kept soliciting me for the Inspire implant but I already told him twice I'm not interested and I'm getting MMA. If it doesn't make him money I'm not sure he cares.

[sephiro499]

Your leakage is bad but I am always surprised that people with AHI that is very low say they don't feel good though. I think it could be something else besides sleep apnea as to why people do not feel well, because my numbers are horrible every night, like around 10 but I feel fine most days. I can't fathom my numbers being around 1 or 2, it has never happened.

Anyways, you may need a chin strap, have you tried one? I need one with nasal pillows because I open my mouth a lot in the middle of the night. Could also be why your mouth is so dry.

I can't wear a chinstrap because it's painful. And if it were not for Cpap I can hardly even wear headphones the bigger and heavier the worse it is. I generally use earbuds. Sometimes just wearing a hat is painful. MMA has other benefits for me besides just sleep apnea that can only be accomplished through surgery. My ins will only pay for it to treat sleep apnea.

I'll try to stay on topic but after thinking about what Jas_williams said , when I do get jaw surgery that wont make my ptsd go away.

I'm willing to try it anyway. Hey if it doesn't work, I'll be sure to be on here warning everyone

I've had jaw surgery. They cut my jaw moved it forward put pins in and wired it shut for 8 weeks. It was miserable. Oh and it didn't prevent me from getting sleep apnea. I wouldn't recommend it EVER. It was the most horrible painful experience in my life and I spent 12+ hours in back labor with my first kid, that was a walk in the park compared to jaw surgery.

My mouth is too small and my development was not stymied. It is from mouth breathing, orthodontics, and modern soft foods. I live on a fixed income and my insurance won't pay for the new DNA dental appliance that can grow both upper and lowers jaws in 3d without surgery, within 9-18 months. Dental care with my insurance is expressly prohibited by statute. Congress could remove it. MMA is my only option and has a success rate as high as 90%.

That should be his job not yours.

The ent really doesn't care. I wont recall all of my expereiences there but has a dr ever had a tantrum and threw a BP cuff across a desk? BTW before surgery no plan was made for my cpap all I was told was either" you can't use it, silence, or call the hospital and find someone who can help you with that. Except ENT is airway expert and it is well within his capacity to help me. They told me so little about the surgery that I had to look up the billing codes aftwards to figure out just what exactly I was getting done.

He wanted me off of it to make me miserable and then I would accept his implant. I can come to no other conclusion. Instead I waited 25 days and restarted it. Screw him.

My expreience was so bad at this ENT place affiliated with a local hospital that I complained about it on FB and someone reached out to me. I told them unless they paid me I'm not willing to access my chronological memory to explain what happened. YES it was that bad.

I went to another ENT who got my operative notes and said he would call me back. After I called his office 3 times I gave up. The bill came in the mail on time though. See no other dr is willing to 'touch another dr's mess' if there is indeed mess to be found. The dr who did the surgery didn't even remember who I was a week later. He can't operate on more than 8-10 people max/week. I don't even know if he drained the fluid the first time. I_just_don't_know and they don't answer questions...

[squid13]

Maybe you could go to your regular GP and see if he could help you. I don't know where your at but my Doctors spend lot's of time with me and we extend pleasantries.

[sephiro499]

Maybe you could go to your regular GP and see if he could help you. I don't know where your at but my Doctors spend lot's of time with me and we extend pleasantries.

The GP is the one who gave me most of the antibiotics. He recommended is SX pressisted to see an ENT. So I saw a new one and he stonewalled me.

[babydinosnoreless]

Your leakage is bad but I am always surprised that people with AHI that is very low say they don't feel good though. I think it could be something else besides sleep apnea as to why people do not feel well, because my numbers are horrible every night, like around 10 but I feel fine most days. I can't fathom my numbers being around 1 or 2, it has never happened.

Anyways, you may need a chin strap, have you tried one? I need one with nasal pillows because I open my mouth a lot in the middle of the night. Could also be why your mouth is so dry.

I can't wear a chinstrap because it's painful. And if it were not for Cpap I can hardly even wear headphones the bigger and heavier the worse it is. I generally use earbuds. Sometimes just wearing a hat is painful. MMA has other benefits for me besides just sleep apnea that can only be accomplished through surgery. My ins will only pay for it to treat sleep apnea.

I'll try to stay on topic but after thinking about what Jas_williams said , when I do get jaw surgery that wont make my ptsd go away.

I'm willing to try it anyway. Hey if it doesn't work, I'll be sure to be on here warning everyone

I've had jaw surgery. They cut my jaw moved it forward put pins in and wired it shut for 8 weeks. It was miserable. Oh and it didn't prevent me from getting sleep apnea. I wouldn't recommend it EVER. It was the most horrible painful experience in my life and I spent 12+ hours in back labor with my first kid, that was a walk in the park compared to jaw surgery.

My mouth is too small and my development was not stymied. It is from mouth breathing, orthodontics, and modern soft foods. I live on a fixed income and my insurance won't pay for the new DNA dental appliance that can grow both upper and lowers jaws in 3d without surgery, within 9-18 months. Dental care with my insurance is expressly prohibited by statute. Congress could remove it. MMA is my only option and has a success rate as high as 90%....

My jaw was too small also. I was 6 when they put me in retainers and I was in middle school when they forced the surgery on me.
There is not a day when my jaw doesn't ache from that damn surgery. But let me repeat I have sleep apnea, the surgery did not and can not fix the fact. 90% success rate my aunt fanny. I'm sure the butcher that did my surgery counts me in his success rates but I wouldn't call daily pain and sleep apnea today as a success.

[patrissimo]

Hi, sorry to hear about your difficulties. There are many other people who, like you, have low numbers and bad sleep. The only reason I'm sure that I have UARS is that ASV machine, and surgeries to expand my airway, have all helped me to sleep better. If I didn't have UARS, then ASV wouldn't cause me to feel more refreshed. Based on Dr. Krakow's work, I think my brain is just very sensitive to flow limitation.

A few things:

1) If your sleep dr is not being helpful, what about going to see Dr. Krakow at Maimonides in New Mexico? I went from out of state to get ASV RX & titration, as well as other advice, and was very glad I did.

2) your sinus issue is clearly affecting your ability to sleep, to wear a mask, etc. You need to fix it. I am an engineer and I have seen this approach a lot when troubleshooting, where you come across something that is clearly a problem, that interferes with further debugging, and that will clearly help your outcome to fix. But because the person isn't sure how to fix it, or has seen fixing it not work before, they just skip it and try to find other things.

Suppose it's the case here that: with this fluid in your sinus, you can't tighten your mask enough to hold pressure (not leak), unless it's so tight it hurts (which wakes you up). In this case, whatever the other issues in your cpap setup or treatment are, we can't find them until you fix this one. It's a blocker. I know nothing about draining fluid-filled sinuses, but you need to be your own advocate, if your ENT doesn't spend enough time with you are won't fix it, find another one, and get it fixed. Then you can wear your mask with proper tightness without facial pain, and then you can proceed with the next steps in your journey towards health.

3) I have had a lot of cpap surgeries. The MMA helped noticeably, but it was highly invasive and a long recovery. I think that palate expansion (ie Dr Li's EASE, there is also DOME) provides similar benefits with far easier recovery. I would recommend anyone who is deeply suffering, like you, to a) look into whether there are airway-specific soft tissue surgeries that fit you (turbinates, tonsils, etc.), b) get an EASE or DOME, and only then c) get an MMA. Keep your expectations realistic along the way.

[sephiro499]

So I bought a Lumis Tx from apnea machines. I followed the Resmed clinician guide and increased the Auto ASV Min EPAP to 9 because I felt like I wasn't getting enough air. I felt better earlier when I woke up and feel I may have overslept. Maybe since I'm so use to it I don't know. I woke up at least 4 times with my pressure at 19.5 because it was so jarring.

[sephiro499]

A few things:

1) If your sleep dr is not being helpful, what about going to see Dr. Krakow at Maimonides in New Mexico?

Suppose it's the case here that: with this fluid in your sinus, you can't tighten your mask enough to hold pressure (not leak), unless it's so tight it hurts (which wakes you up).

3) I have had a lot of cpap surgeries. The MMA helped noticeably, but it was highly invasive and a long recovery. I think that palate expansion (ie Dr Li's EASE, there is also DOME) provides similar benefits with far easier recovery. I would recommend anyone who is deeply suffering, like you, to a) look into whether there are airway-specific soft tissue surgeries that fit you (turbinates, tonsils, etc.), b) get an EASE or DOME, and only then c) get an MMA. Keep your expectations realistic along the way.

Dr. Krakow is retired now right? I went to his website and there is a new Dr running his clinic. It would also be prohibitory expensive for me to travel from MD to NM.

Regarding the sinus issue, it is still a problem but I'm seeing an ENT that was in the same building as the guys who seemed to care less. So much so it says on his website that this dr left a 'big group practice' to provide more personalized care. It turns out all the staff he has now, are all people who had enough of the 'other guy' and left with him to start this solo practice. Wish I knew about him BEFORE I had surgery but that's life. He prescribed me Budesonide and I put that into a Neilmed and try to squirt it into my maxillary sinus. It does work but so far no long lasting relief.

Dr Kasey Li? He doesn't accept my insurance, Medicare. I emailed him years ago. All the facial growth orthodontics I'd have to pay out of pocket and aren't an option since I live on a low fixed income. The one thing Medicare WILL pay for is MMA. I've already had my tonsils and adenoids removed as a child, the tonsils twice as they grew back.

[squid13]

(I woke up at least 4 times with my pressure at 19.5 because it was so jarring.) If you were using a VAuto before and now an ASV Auto you'll get use to the fast pressure jump after awhile. An ASV moves so much faster in pressure increase than a VAuto. An ASV is like Wham it's there as far as pressure increase.

[sephiro499]

(I woke up at least 4 times with my pressure at 19.5 because it was so jarring.) If you were using a VAuto before and now an ASV Auto you'll get use to the fast pressure jump after awhile. An ASV moves so much faster in pressure increase than a VAuto. An ASV is like Wham it's there as far as pressure increase.

Right. I was looking at the flow output, so much cleaner than before. Also the Auto ASV would take me from 13 to 19 within 5 seconds. My highest titrated pressure ever was 14. So it's detecting 'something'? What that is I don't know. I'm going to stick with it, but I find these high pressures so contradictory from my previous sleep studies. If I can feel better or sleep less it's a win.

[squid13]

As far as I'm concerned there is nothing better than an ASV to sleep with, once you get use to it, it is so easy to breath with.

[Goofproof]

After 11 years, you are still alive to enjoy XPAP, I'd call that a improvement. I can breath better at night with my XPAP, than I do all day with Air alone. I have trouble sleeping and still doze off watching T.V., but that may be med's. I enjoy my 15 years on XPAP, will take 15 more years if I can get it! I made piece with my XPAP the first night, no other option except to die, it was a no-brainer, use it or die, is a good Motivator. Jim