Re: WTF is wrong with UARS treatment in the Netherlands

81
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.
Na 3 jaar strijden eindelijk de diagnose UARS
Dit onderschrift is een eerbetoon aan zij die nog in stilte lijden omdat hun artsen volhouden dat het "tussen de oren" zit
Dreamstation BiPAP AutoSV, ResMed AirFit F30i

Re: WTF is wrong with UARS treatment in the Netherlands

82
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

Re: WTF is wrong with UARS treatment in the Netherlands

84
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.
Wel klachten, geen diagnose, zelf aan de slag met het vermoeden van UARS.
Resmed Airsense 10 Autoset, settings: CPAP 7.4 cmH2O en EPR 2
Masker: nader te bepalen

Momenteel aan het wennen aan iNAP

Re: WTF is wrong with UARS treatment in the Netherlands

85
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

Re: WTF is wrong with UARS treatment in the Netherlands

86
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 :D
Na 3 jaar strijden eindelijk de diagnose UARS
Dit onderschrift is een eerbetoon aan zij die nog in stilte lijden omdat hun artsen volhouden dat het "tussen de oren" zit
Dreamstation BiPAP AutoSV, ResMed AirFit F30i

Re: WTF is wrong with UARS treatment in the Netherlands

87
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.
Wel klachten, geen diagnose, zelf aan de slag met het vermoeden van UARS.
Resmed Airsense 10 Autoset, settings: CPAP 7.4 cmH2O en EPR 2
Masker: nader te bepalen

Momenteel aan het wennen aan iNAP

Re: WTF is wrong with UARS treatment in the Netherlands

88
I consulted with Raffaini in Parma. Will get into the specifications here.

I have no choice but to go private and in Europe, Italian surgeons seem to be my best option since I can't go to the US or something and in Europe the Italian private ones are the ones that have the most clout / reputation. Not that that should be the leading factors but having to choose surgeons privately, these Italian private surgeons seem well ruled, so feels safer for me as compared to investing I don't know a less known e.g. German or French doctor with a language barrier that I have heard less about.

Heard many times people saying Raffaini was arrogant but honestly I liked him. Did not seem anything in particular, was pretty nice. Interesting how many different the experience can be from what you can read online. I have heard several things online about Raffaini, did not see that reflected in my experience at all.

The CBCT scans that were taken there were of high quality, whereas elsewhere I hadn't even received any. They also took pictures, I mean they always do everywhere, but the assistants were specifically trained to ensure decent neutral posture in the pictures. That's something I had not seen elsewhere. The whole place made a good impression with me.

Raffaini looked at the scans and saw the problem, called it an apparently narrow airway. It is not ridiculous narrow though, most UARS / OSA folks would be worse, on average. That makes me hopeful that this can actually be fixed surgically.

We've got some decent / sufficient nasal aperture or about 24mm. That is not great but it is above many UARS people. While nasal breathing can be better than this, this is probably not the major bottleneck that chokes me at night. So that's positive because that would be a separate, additional surgery that is mainly only done well in the US. and we've got a tongue that doesn't fit well in the palate. It looks too big in proportion to the space that is there. That is probably the culprit. That's good because that's what we can do with double jaw surgery. I was proposed a 10mm advancement (lower jaw, probably a bit less than that at the maxilla). Initially i was a bit anxious (because 10mm is a bit the minimum recommended for OSA / UARS. Minimum, meaning many get more hence the anxiety). Raffaini has also done before things like 25mm so it's not like he's not well versed in bigger advances, he just thought my face couldn't / shouldn't handle that. Initially anxious but after reviewing the scans in more detail I think I can see that something like 10mm should create enough space, I can see that from 10mm CBCTs I find online. It's not a small advancement, although neither it is a huge one. So I am feeling hopeful and I think I will go through with it.

I was also offered no preparatory orthodontics (surgery first approach). This is not so common generally speaking. I was bracing myself for like an additional year of preparatory orthodontics suffering. Almost seems too good to be true, but I can understand why he says that. The position is decent already (had many braces before), and usually premolars are extracted so as to pull the lower teeth backwards so as to allow a greater mandibular movement. Sort of creating an overbite, so that you can move the mandible more than the maxilla. But I already have an overbite. So it might actually be good and not too good to be true. I do need some post-OP ortho tho to be clear, that's pretty inevitable

I could say yes right now and do this in 2 months. But I will take my time to think. I will speak with Kasey Li online in July and perhaps a second time with Raffaini. But I am quite confident I will choose him.

Interesting how things go much quicker this way huh? More progress in this update than in the last 1.5 years.

modedit RM: afbeeldingen aangepast

Re: WTF is wrong with UARS treatment in the Netherlands

89
Following. I think I encountered you on the UARS subreddit.

Having read the comment of another dude I called that clinic in Dortmund and was sad to hear it was about 3k EUR.
For me, having lost my job because of the extreme fatigue and lack of energy / cognition, I am not in a good financial situation so that 3k is mostly all my savings.
So I am stuck in the Dutch system and now I have a MAD I can try (overbite / lud snorer) and after that I hope to get into the PAP machines.

Anyway I admire your drive to get to the bottom of this. Good luck my dude!