EstrellaJJ schreef: 21 dec 2023, 11:15 So let’s suppose I increase pressure. Just EPAP.

Whenever raising EPAP causes too many centrals for a given PS setting, you can try decreasing PS at this higher EPAP level.

This scenario more or less indicates that EPAP wasn't at the point of diminishing returns before it was raised.

Heyoh, just an update. I have been diagnosed in Germany (you may know already from other forums) with UARS. Finally, goddamit this was difficult to diagnose.

I have partial relief with BIPAP + MAD. Not a stable situation.

The objective now is to do palatal expansion in Germany and then jaw surgery either in Germany or in the Netherlands. While I do know where to go in Germany already, I would be interested for jaw surgery in NL but it is a bit weird because there's no advertisement whatsoever, no real private clinic, no cases online, no recommendations online for surgeries, just nothing. Only place I have somewhat heard of was ETZ Tilburg (Erik Nout). That is a bit worrying when you are looking at a surgery as important as this.

Was wondering if anybody has any surgeon names in the Netherlands that i can check out / talk to / ask to be referred for?

In germany, I have been told the recession of the jaws is enough that it would / should be covered by the public system even without sleep apnea. So I have faith I could get that part done in NL, at least one thing

Leander Dubois did a good job on my wife's top jaw extension. But from what I can find on the internet, he seems to have moved on into the trauma department, where people end up unexpectedly, f. ex. when your scull is crushed after a car accident. So you'll have to look further probably.

EstrellaJJ schreef: 16 apr 2024, 09:26 Heyoh, just an update. I have been diagnosed in Germany (you may know already from other forums) with UARS. Finally, goddamit this was difficult to diagnose.

[...] While I do know where to go in Germany already, [...]
In germany, I have been told the recession of the jaws is enough that it would / should be covered by the public system even without sleep apnea. So I have faith I could get that part done in NL, at least one thing

Where did you go in Germany? I live there, but my visits to ENT doctors in Kleve and Goch left me desparate. Did you go to some private clinic?

As for your plan to have surgery in NL paid for by insurance, it sounds pretty daring to me. I hope you can manage it. You'll need a good doctor on your side.

CarlaB schreef: 17 apr 2024, 09:32

EstrellaJJ schreef: 16 apr 2024, 09:26 Heyoh, just an update. I have been diagnosed in Germany (you may know already from other forums) with UARS. Finally, goddamit this was difficult to diagnose.

[...] While I do know where to go in Germany already, [...]
In germany, I have been told the recession of the jaws is enough that it would / should be covered by the public system even without sleep apnea. So I have faith I could get that part done in NL, at least one thing

Where did you go in Germany? I live there, but my visits to ENT doctors in Kleve and Goch left me desparate. Did you go to some private clinic?

As for your plan to have surgery in NL paid for by insurance, it sounds pretty daring to me. I hope you can manage it. You'll need a good doctor on your side.

I went to Dr. Riccardo Stoohs in Somnolab Dortmund. I posted more details on reddit

The plan to have NL pay for the surgery is dead already. I called the Dutch sleep doctor. As soon as I told her I went to Germany she was like already reaching to close the case "case solved! happy for you!" and I was like get the hell back here...I have malformations in the jaw as pointed out by doctors and surgeons. I need a CBCT scan, can you arrange it? She just straight up said no and told me that in the Netherlands you don't go to the doctors and tell them what to do. Honestly there is no hope in NL. I should just cross it off of the map in terms of treatment and surgery. i will probably try to do this privately abroad and then sue providers in the Netherlands after the fact. Appalling state of affairs. The doctors won't do anything at all but they do get pissed if you try to find a way to cure yourself lol what do they want me to do, just take it and die??? I guess the title of this post stays relevant...

I could work with them even if they don't understand UARS if at least they are willing to listen and understand me, but when you couple the ignorance with arrogance at that point there's nothing that can be done. I just encourage anyone who has UARS to go abroad

EstrellaJJ schreef: 19 apr 2024, 10:22 The doctors won't do anything at all but they do get pissed if you try to find a way to cure yourself lol what do they want me to do, just take it and die???

Such is the standard of care here

Indeed. In Germany the public health system isn't any better, it's more authoritarian and they tolerate patients who think for themselves even less. Frankly I got mad reading the reviews of the private clinic you mentioned, where people get treated so well compared to the demeaning treatment I met when seeing two ENT doctors as a public patient. At least the Dutch isn't such a class system where only the rich are welcomed.