Central Sleep Apnea Questions

[snnnark]

Well said John! I try to avoid reading what he writes but to come up with that rubbish... and he SAYS he's a RPSGT!

Maybe that stands for Really Persistent Stupid Gormless Troll.

[socknitster]

...
Efficacy of Adaptive Servoventilation in Treatment of Complex and Central Sleep Apnea Syndromes
http://chestjournal.chestpubs.org/conte ... l.pdf+html
...

Auto Servo Ventilators are crap and cure nothing. They were designed to correct 'Complex Sleep Apnea' which is french for 'Donno howto fix patient'. They are basically auto-titrator bipaps with three pressures instead of two. There is no way they are going to fix a true central that wasn't caused by a doctor overtitrating his patient.

Well, aren't we special? I see you add initials "RPSGT" after your name. Well I'll toss some initials behind my name: Sporadic OPCA, Possible MSA. Clinially proven CSA.

I would HIGHLY recommend you actually READ the article I provided. In particular, I draw your attention to the ASV effectivness diagram, which I provide below. Using carefully calibrated polysomnoraphy, the writers of that article note that ASV is the most effective tool for periodic breathing as well as Central Apneas. This is not opinion. Nor is this the only study. Other studies confirm it. This study was just the first and has a very effective diagram to illustrate the DATA from the study - not the opinion of the researchers.

The entire article outlines the diagram more, but it clearly shows that ASV is FAR more effective at reducing problems than other therapies.

Why do I make a big deal about this? It was the very thought that central apneas are not a big deal that led to some of my current health problems. I had central sleep apnea for YEARS before I found a neurologist who decided to help me address it. The years without effective treatment led to unmanaged (in spite of a boat load of medicine) high blood pressure. Combine that with ibuprofen use to battle the daily headaches and voila! Chronic Kindey Disease (Stage 3) is the DIRECT result of failing to take Central Sleep Apneas seriously.

Please do NOT state such opinions unless you have facts to back them up. There are consequences to our words and actions. Unfortunately, it is not you that will face that consequence.

Now back to our regularly scheduled programs ...

John,

I realize this is off-topic but I wanted to say thank you for posting the link to that article. My current sleep doctor, a pulmonologist has "I don't know how to fix you"--itis. He thinks I might have complex sleep apnea syndrome or possibly not have any OSA at all (?). I think I might have UARS (I have lots of "spontaneous" arousals that they can't link to any respiratory events), but he will NOT listen to me! I am asking for the more specific test for this but he acts like what I'm talking about doesn't exist and that the belts they put on your chest and abdomen are sensitive enough and my research says otherwise. His nurse actually said to me that I don't want the diagnosis of UARS because insurance won't cover treatment. What kind of sense does that make when I'm trying to save my health and my sanity and just plain feel better? I am trying to learn more (and this article will help!) as well as looking for a University Hospital-based sleep clinic where I can get thorough and proper testing. When you are one of the oddball patients you have to do the work yourself. I will have to drive 1-2 hours to reach such a place. I also have small amounts of central apnea. Again, thank you. If you have any other nuggets of wisdome, please PM me. I plan on posting a new thread about this UARS stuff soon, but I'm trying to educate myself about it first.

jen

[socknitster]

This is a very important thread to the person who started it. She has a child with desperate need. Please, lets not let this thread degenerate into name calling and mud slinging. Lets remember that a child's life is at stake here. This mom is getting up every night, multiple times a night, to SAVE HER CHILD'S LIFE. OK?

[Calist]

...
Efficacy of Adaptive Servoventilation in Treatment of Complex and Central Sleep Apnea Syndromes
http://chestjournal.chestpubs.org/conte ... l.pdf+html
...

Auto Servo Ventilators are crap and cure nothing. They were designed to correct 'Complex Sleep Apnea' which is french for 'Donno howto fix patient'. They are basically auto-titrator bipaps with three pressures instead of two. There is no way they are going to fix a true central that wasn't caused by a doctor overtitrating his patient.

Well, aren't we special? I see you add initials "RPSGT" after your name. Well I'll toss some initials behind my name: Sporadic OPCA, Possible MSA. Clinially proven CSA.

Wow, I am very impressed by your credentials. (trying not to be sarcastic here).

I would HIGHLY recommend you actually READ the article I provided. In particular, I draw your attention to the ASV effectivness diagram, which I provide below.

Using carefully calibrated polysomnoraphy, the writers of that article note that ASV is the most effective tool for periodic breathing as well as Central Apneas. This is not opinion. Nor is this the only study. Other studies confirm it.

All done by respironics so that they can keep the patent on their system while at the same time claiming that their system is better than everyone elses. You know, that is fine. Really. I am not going to give respironics a hard time. Mainly it is because they bring me cheez-its and I like cheez-its. But just because some one writes an article and pays to have this article shoved down some one elses throat with a lot of graphs they pulled out of thin air, does not mean I have to listen to it. I am focused on one thing and that is fixing my patients. If ASV can do that, I will use ASV. If 02 can do that, I will use 02. I am an equal opportunity fixer. Now a person might ask why more people are not using ASV if they can TRUELY do everything that Respironics say they can.

According the respironics an ASV machine can fix OSA, CSA, Complex Apnea..... indeed they have not mentioned anything that ASV can't fix. But techs rarely ever use them... why not? If you would like to do a "Non-sponsored" article of your own, you do not have to set up a multi-million dollar trial study. All you have to do is go to a local lab and talk to an RPSGT. Ask him what an ASV is good for and he will tell you.

This study was just the first and has a very effective diagram to illustrate the DATA from the study - not the opinion of the researchers.



The entire article outlines the diagram more, but it clearly shows that ASV is FAR more effective at reducing problems than other therapies.

I don't want to sound like I am implying that Respironics would make stuff up just to widen their profit angle but I do feel obligated to point out that they are not a non-profit organization.

Why do I make a big deal about this? It was the very thought that central apneas are not a big deal that led to some of my current health problems. I had central sleep apnea for YEARS before I found a neurologist who decided to help me address it. The years without effective treatment led to unmanaged (in spite of a boat load of medicine) high blood pressure. Combine that with ibuprofen use to battle the daily headaches and voila! Chronic Kindey Disease (Stage 3) is the DIRECT result of failing to take Central Sleep Apneas seriously.

I can relate to you, I seriously can. I live at high altitude and I hate to say it but I have had a lot of people with CSA sent to me by physicians who have bought into the hype. It's not their fault really. Some one from resmed or respironics gave them a line about how ASV and BIPAP with a back up rate fixes everything and they were simply trying to fix their patient with out having to send them for a PSG. And if it would have worked, I would not even have seen those patients. I can't tell you how many patients have been sent to me for "Complex Apnea" or "Severe OSA" or "Rem related hypo" and I fix them on 1lpm 02. I have seen patients that have gone for years with out effective treatment, people that have tried everything and I'm glad you have made such a great recovery from it. Wait untill next year when respironics adds a fourth pressure to ASV and calls it something new. We'll all stand around and here all the new things that Respironics claims it fixes.

Please do NOT state such opinions unless you have facts to back them up. There are consequences to our words and actions. Unfortunately, it is not you that will face that consequence.

I've got facts. I'm afraid however that you will not hear these facts repeated by a Resmed or a Respironics rep.

[calgurl@hrt]

Calist and JBF - How is any of that bickering helpful to this mom who is only trying to find serious answers to her questions about her child. Take it to another thread but don't hijack this thread to argue - you should be ashamed of yourselves.

[JohnBFisher]

Calist and JBF - How is any of that bickering helpful to this mom who is only trying to find serious answers to her questions about her child. Take it to another thread but don't hijack this thread to argue - you should be ashamed of yourselves.

Greetings calgurl@hrt, while I agree we should focus on the need MomOfThree expressed, there is value in honest disagreement within this board. Let me provide clarity to that claim - for you and anyone else reading the board.

Calist questioned my note about ASV units. He is all too correct that too many doctors glom onto the latest and greatest and decide that will address all problems. I personally select doctors who are more inclinded to prescribe generic medications than not. Why? Generics have a far better track record. And at heart that is the complain (valid, indeed) that Calist has with the ASV units.

However, I provided evidence to help support the ASV units. There is a valid time they can and should be used. My case relates directly to the issues that MomOfThree's son faces. His issues appear (not the *appear*) to be more tied to problems with the central nervous system. I know that an ASV unit helps.

Yet, Calist also offered information that MomOfThree can use. Use of supplimental O2 also can help. And here I tend to agree with the need to use a generic approach. O2 use with children is well understood. If it helps MomOfThree's son, it would be the best option. (It can be cheaper, though oxygen concentrators are not cheap). But if it helps, it is MUCH better understood by doctors.

So, as long as we are both willing to keep the discussion civil, MomOfThree gains by us both taking different sides of the argument. In this, I appreciate that Calist accepted that my own personal journey means I have done extensive research on this. Though I do not fully embrace the full dismissiveness of ASV therapy, Calist raises valid points that ANY patient should consider. We should work from the least to the most. The least costly, the least invasive, the least annoying. CPAP is better if it works. If that fails, then we consider the next step in therapy. BiPAP is better than ASV if it works. O2 is better if it works. ASV if needed. This is not just wise for financial reasons - and that is why insurance companies often require the progression. It is also makes good medical sense, since it uses the least approach to solve a problem.

As an aside, one argument that I do almost completely reject is the "If the manufacturer made it, it must be bad" thought. So what! If a computer manufacturer makes a computer that is faster and better and addresses specific needs of users is it bad? Absolutely not!! If it is a good idea and a market that no one else had addressed you can bet other manufacturers will be quick to create a similar computer.

What is bad, and I agree completely with Calist on this, is when others assume that super-computer should be used by everyone to solve their problems. We should never purchase more computer and/or storage than we need. My mother has a much lower end computer than I do.

So, it should be with medical technology. No more than is needed. Someone with "simple" obstructive sleep apnea (OSA) does not require an ASV unit. It does not make financial or medical sense to use a cannon to swat a fly.

So, MomOfThree, though I searched for articles on point for your son, I have not found any. I agree that you should continue to work with his neurologist and specialists to try to stabilize his breathing during sleep. O2 is a good starting point. ASV might be an option that you might ask about. However, as I previously noted, it may not be approved for pediatric use.

[socknitster]

Bump.

Can we return to the regularly scheduled program. With info that might help MomofThree?

[socknitster]

Leah,

I keep gettin a fatal error every time I try to reply to your last email so I will post it here in hopes you will get it faster while I investigate why my email isn't working.

To post pictures or charts on here, you have to host them somewhere else. You cannot download them directly to cpaptalk.com. If you have them saved as a file, you find a picture hosting website or a free blog and post them there and then post the links here--either to the whole blog if that is what you choose, or to the original files or screenshots, individually. Personally, I have done it both ways and the easiest thing for you to do would be to get a free blog from blogger and post everything there. Then you can direct anyone to view it, even doctors. It would be fastest in both short and long term IMHO.

I also want to say that I'm so sorry the Geneticist you took your boy to was such a complete idiot. I think you should try again with another Geneticist. I have seen some bad doctors who would have screwed me over royally if I had listened to them. Luckily I kept looking and found some who could help. You should too.

Big Hugs!

Jen

[momofthree]

Thanks to everyone for your information on my post. I do appreciate your information, even though some of it does not apply to us AT THIS TIME.

We got the call from the sleep lab and go in tomorrow night for the sleep study with the low flow oxygen to see if that will help him. I will let you know how that goes as soon as I get the call from the doctor!

We went to the Geneticist appointment Tuesday and he wanted to run was a DNA analysis that would tell me that he has Central Sleep Apnea. I did not remember the name of the genetic test but I will post it here when I go to the Neurologist on the 28th and get the "official" name of it from the Geneticist's letter that he is supposed to send to the Neurologist. The appointment was not the greatest experience. The Geneticist refused to do the testing that our PCP wanted me to go to the geneticist for, was very crass, and the only test that he wanted to run was the DNA analysis (which we already know he has, and we cannot afford at this time!)

Jen, thanks again for your support! I will try to get the oximeter readings posted soon.

Mother of three angels, one of whom forgets to breathe

[JohnBFisher]

Here's hoping the low flow oxygen therapy helps. It often makes a huge difference. We will be thinking of you, your son, and your family!

[Calist]

Indeed, all we can do is wait and see at this point.

[timbalionguy]

I think the genetic approach is the right approach in this case. The symptoms strongly suggest there is some sort of defect in this boy's protein or porphyrin chemistry. The CSA is the result and not the cause (or onr of the causes). I really hope that you can get to the bottom of this problem, and will be praying for you.

Does the boy like meat a lot? Something tells me that some good quality red meat or even organ meat protein might help his blood/iron problem. That is, if this kind of food won't make something worse, like the glycine shedding.

As far as ASV goes, John B Fisher has forgotten more about ASV than many doctors even know. I also use an ASV, and it has been the only thing that has worked for me....And I don't have the normal kinds of conditions these machines are prescribed for. Just a very stubborn and strange case of compSAS.

[socknitster]

I agree that these symptoms suggest a strong genetic component. It is a terrible shame that the first geneticist they saw was a fool. I think seeing another, preferably at a university hospital and with a good reputation is in order!

[JohnBFisher]

... I agree that these symptoms suggest a strong genetic component. It is a terrible shame that the first geneticist they saw ...

It is not just doctors that do this. For most of us, all too often we tend to be comfortable with what we know. Then as we face a problem, we take out that knowledge and try to solve the problem. Essentially this is the old maxim:

If the only tool you have is a hammer, you tend to see every problem as a nail.

In fact, if we just face a limited number of problems then a limited toolbox does actually work quite well. However, whenever that person faces a new and unique problem they should recognize their toolbox can not adequately address the problem.

As a professional problem solver, I typically spent most of my time teaching others to learn when to recognize the limits of their toolbox. Doing so allows them to reach out for additional help to more quickly resolve problems.

Unfortunately, medical professionals - based on our current medical system - are NOT rewarded for the "right" behavior. They are rewarded for doing tests, not referring someone to another professional.

Thus, as patients, it is our responsibility to guide the process toward someone whose toolbox contains the tools to help address the problems. I agree it is a real shame that MomOfThree and her family must now find another and stand in line. As I noted, I pray the low flow oxygen therapy will help.