Success!--Supplemental O2 over ASV

It's taken me a while to post again, as work has extremely busy and my last sleep study raised some issues that needed to sort out.
I had a second sleep study on the 13th, which was intended to test the effectiveness of Cpap plus supplemental oxygen and an ASV titration. I was very hopeful for the ASV titration, as previous CPAP and APAP therapies had not been very successful, and I was not fond of adding the additional apparatus of supplemental oxygen.
Things got off to an interesting start when my lab tech identified himself as Calist. At that point I had just briefly encountered the controversy he had generated on this forum, but little was left to doubt as his opinions were openly stated as I was getting wired up. I was not pleased when any knowledge I might have of my treatment so far was summarily dismissed, and then he stated that he would try the ASV machine only briefly to prove that it didn't work, and then he would "fix me". I was truly concerned that my sleep study was about to be highjacked, which did not get resolved until I spoke to my doctor about a week later regarding the sleep study results. I think the subject of Calist has been adequately dealt with for the purposes of this forum, and I do not wish to divert this post to that subject. My need was for him to fulfill the role of an adequately trained technician, which apparently he did.
According to my doctor, I was on the ASV machine for 3 1/2 hours, with no cessation of disruptive events. He was satisfied that the titration was properly done, so I've set the issue aside as further results seem to speak for themselves. Straight CPAP was tried again, with no reduction in events until oxygen was added at 2 liters per minute. Then the events subsided completely. On the doctor's suggestion I've been on CPAP 8 cm with oxygen at 2 liters per minute for 8 days now. The first few days were a vast improvement (from an AHI of 15 to 22 to between 4 and 7) even if they were a bit erratic, and the last 4 days have settled down to a consistent AHI of between 1 and 2, and my periodic breathing which was running 30 to 40% of the night is now down to 5% or less. Centrals are down to about .4, with OA's and hypopnea's making up the rest of the AHI. Even though I'm not thrilled with being tethered to the oxygen generator when I travel, I don't think I can argue with the results. I have the noisy machine tucked away in a closet, and it isn't audible in the bedroom. I'm not experiencing the severe energy loss in the evenings like I was, and although I haven't yet returned to a consistent exercise routine, I've been doing physical work all day long and throwing off a pretty good cold for the last few days. I'm hopeful that a bit more time will do the trick. I have an in-person review with my doctor next week, and I will question him about raising the CPAP to 8.5 to see if that will help with the OA's and hypopneas even further without aggravating the centrals.
It seems in my case the oxygen did what the ASV could not. I'm thankful to the nurse in the sleep center who suggested the possibility even when I was skeptical. Should I should have been happily ignorant? Without having learned the benefit of a data-capable machine, and enough basic knowledge to interpret the results, I think it would have taken many months longer to refine my therapy to the point of success. For my part I had always wanted to be an informed part of the team with my doctors, which I think is the right approach. Supplying my home-based data really did help things move along.
One more thing to add. I've been having trouble with the nasal pillows from my Swift FX producing painful sores on the front of my nose. My DME tech suggested AYR creme from the local pharmacy, which I have been applying to the nasal pillows before putting them on. My sores are now gone. I had to chuckle when she said I couldn't use Vaseline as it was a petroleum based product, which increased the risk of fire with the oxygen. I had visions of an explosion in my nostrils...... Best to be safe, though.
So once again, my thanks to all who helped me get educated, and for the support to work through the ups and downs of the last 5 months. Any additional comments about the therapy are always useful.

A few comments.

First, it is WONDERFUL that you found a therapy that works *for you*. Hopefully improved sleep will help your overall health and outlook. I know it has for many of us. So, enjoy the sleep. As I've noted, may your dream of dreams be happily fulfilled.

The "for you" is important. Not everyone responds to oxygen. Why? Not everyone has the same issue. Though oxygen can help some, it does not help everyone.

You will see me (and others) bristle at the complete "dismissive" attitude from doctors and medical professionals. I have literally spent thousands of dollars (of my own money) and tens of thousands (of insurance money) dealing with my neurological disorder. I've had a lot of doctors and medical professionals be quite dismissive.

One doctor told me I could not have central apnea because it is rare. I ask what the tests show and sure enough they CLEARLY show central apneas. But hey! The doctor can't be wrong, can they?

Another doctor told me that the switch to BiPAP was completely unnecessary. This after another sleep tech and doctor noted that I had a LOT of spontaneous arousals on CPAP and BiPAP reduced them dramatically. So, the new doctor ordered a new sleep study. The result, I needed BiPAP (at a slightly different pressure). When I asked the doctor why it came back as BiPAP if he felt I did not need it, he just changed the subject.

I've had other doctors tell me that all my symptoms are just anxiety. Of course a much more highly qualified neuro-opthamologist could QUICKLY tell my symptoms indicated a problem with my cerebellum.

So, remember. Just when a medical professional or doctor think they know all the answers, they may miss the boat for some of us. Also remember that at least half of the class of graduating doctors finish in the BOTTOM half of their class. "Doctor" and "Medical Professional" means they had the CHANCE to study more than most of us. But it may not mean they are competent.

As a result of my experience, I look for a doctor who will work with me to help manage my issues. And I have to be persistent sometimes to get the real issues addressed - not just what they are used to handling.

But once again, it is WONDERFUL that you found something that works for you. Here's hoping many more nights of good sleep are in your future.

Thanks for the update, Steve.

Ditto to John's words:

JohnBFisher wrote:First, it is WONDERFUL that you found a therapy that works *for you*. Hopefully improved sleep will help your overall health and outlook. I know it has for many of us. So, enjoy the sleep. As I've noted, may your dream of dreams be happily fulfilled.

The "for you" is important.

stevealive wrote:Should I should have been happily ignorant? Without having learned the benefit of a data-capable machine, and enough basic knowledge to interpret the results, I think it would have taken many months longer to refine my therapy to the point of success. For my part I had always wanted to be an informed part of the team with my doctors, which I think is the right approach. Supplying my home-based data really did help things move along.

I think you're correct about the right approach being to educate yourself in order to become an informed part of your medical team.

As John said:

JohnBFisher wrote:I look for a doctor who will work with me to help manage my issues.

Sounds like you've found a good doctor who is willing to work with you, Steve. It's reassuring to hear that the doctor felt the titration was handled competently. And even more reassuring that you're able to download your own therapy data -- confirming that the prescribed treatment is going well.

I was lucky since my Dr, Nurses etc. all know I have a medical background and listened to my concerns. I added 02 to my APAP just a couple of weeks after starting since I had the oximitery reports to show that my therapy was doing everything that it should. I didn't have to go back in for another study a simple "Official" home overnight oximetery with the sleep lab's equipment was all that was required. But glad to hear that things went well with your study and the results.

regards
John

Steve, great news that you've found better treatment! If it were me and the tech ID'd himself as Calist, I think I'd have gotten depressed & concerned about the value of the PSG...nice to hear it went well! Keep us posted.

Bump

Brendon, any reason to "bump" this post?

As I noted, in my original response. It is good the therapy worked for the original poster. However, supplemental O2 does not always work.

Particularly in the case of Central Sleep Apnea, where the cause of the apnea could be due to numerous issues, the development of an effective therapy must be a collaboration between the sleep doctor, the sleep technician, the durable medical equipment supplier and the patient. All parties must work together to find the optimal answer.

If your point is that O2 is *always* better than ASV, then the answer to that is a resounding NO! It might be the answer for one patient. But it may not be the answer for the next. Again, it depends on the underlying problem that triggers the central sleep apnea for the particular patient.

The more I learn about central sleep apnea, the more I am convinced the therapy must be as unique as the individual.

JohnBFisher wrote:Brendon, any reason to "bump" this post?

Interestingly, Brendon's very first post ever was to lament about one of his previous posts having been deleted. Hmmm... Coincidentally, that just so happened to be when Calist was in chat.

My biggest question is HOW and WHY this patient came to our message board being clueless he had that outstanding periodic breathing and central apnea mess on his hands. And if he was so easy to "fix" then why wasn't he "fixed" long before coming to our message board completely unaware he had all those outstanding central dysregulation problems?

Sad IMO... I keep wondering exactly how much criminal or medical negligence might have transpired in this particular case. I sure hope none...




viewtopic.php?f=1&t=55279&st=0&sk=t&sd=a#p517197

Bump

stevealive wrote:Calist... stated that he would try the ASV machine only briefly to prove that it didn't work, and then he would "fix me"..

I would be curious whether Calist used a BiPAP Auto SV or an Adapt SV only briefly to prove that it didn't work. The two devices are not equal.

Banned wrote:

stevealive wrote:Calist... stated that he would try the ASV machine only briefly to prove that it didn't work, and then he would "fix me"..

I would be curious whether Calist used a BiPAP Auto SV or an Adapt SV only briefly to prove that it didn't work. The two devices are not equal.

Quite frankly, here are the only three ways someone would know ahead of time ASV isn't going to work on periodic breathing with central apneas:

1) The tech never learned how to get ASV working in general----hence the prediction is always going to be correct,
2) The tech is predisposed to proving he is right, and will force the outcome that serves his best interest,
3) That tech is clairvoyant

I think we can safely rule out that third one...

-SWS wrote: 3) That tech is clairvoyant

I think we can safely rule out that third one...

The tech may not be clairvoyant, but he may have a simple understanding that O2 is an effective therapy at altitude.

Banned wrote:

-SWS wrote: 3) That tech is clairvoyant

I think we can safely rule out that third one...

The tech may not be clairvoyant, but he may have a simple understanding that O2 is an effective therapy at altitude.

What does that have to do with the tech bizarrely claiming to know ahead of time that ASV will never work?

We already discussed that simple O2 understanding in the original thread HERE and especially HERE---long before the simple "fix" was implemented. That gets us back to the question I posed: WHERE was that simple "fix" in the first place? And that oxygen finally proved viable says absolutely nothing about whether ASV will or won't work...

O2 is not an ASV proof or disproof. And an extremely biased sleep tech behind the PSG controls is not an ASV proof or disproof either. I still want to know why stevealive wasn't "fixed" (adequately treated) in the first place...

stevealive wrote:Things got off to an interesting start when my lab tech identified himself as Calist.

viewtopic.php?p=534393#p534393

Calist banned by the forum administrator Oct. 19, 2010
viewtopic.php?p=530710#p530710

Calist's first post on cpaptalk, Oct 11, 2010
"Who here works in medicine?"
viewtopic.php?p=528035#p528035

When editing Calist's first post, the forumadmin removed all but the first sentences.

Removed from Calist's original post -- Calist had said he was an RPSGT (Registered Polysomnographic Technologist) which is a credential issued by the BRPT (Board of Registered Polysomnographic Technologists) and was an REEGT (R. EEG T. - Registered ElectroEncephalographic Technologist) a credential issued by the ABRET (American Board of Registration of ElectroEncephalographic and Evoked Potential Technologists.)

Thus, sleepydawn's question on page 3 of that topic:

sleepydawn wrote:I wonder if one of the medical professionals here could tell me if I am looking in the correct place to verify RPSGT and REEGT accreditation? I looked at the two links posted below but when I searched for James Stillwell (Calist) there were no matches. Is that an indication that I am looking in the wrong place? I would like to check on the techs who did my and my kid's polysomnographies.

http://abret.org/verify/credential-search/
http://www.brpt.org/cvweb_brpt/cgi-bin/ ... Search.htm

Soon after sleepydawn asked that question and mentioned that the name "James Stillwell" did not come up on the BRPT site, I saw Calist in the cpaptalk chatroom. I asked him why the name "James Stillwell" did not appear on the BRPT list.

Calist told me (in open chat) that "Stillwell" was not his real last name. He told me his name was actually James Anderson. He also typed out his RPSGT registration number. He said if I wanted to verify he worked in a sleep lab, I could call him right then. He typed out a phone number he said was for the sleep lab of Mercy Medical in Durango, CO. Said if I called right then, he would answer. I declined to call the number.

Another person (nicknamed gvz) was in the chatroom that night. gvz said he'd call the number. Apparently gvz did call it, and he said "Calist" did answer.

On page 14 of the thread titled "help me address these comments"
viewtopic.php?p=473855#p473855
NotMuffy wrote:

gvz wrote:I called 411 for the medical center he works at, spoke to the operator, asked specifically for sleep lab, and Calist picked up.

-----

gvz wrote:...he is a real person...

In the meantime, I looked on the BRPT site to see if "James Anderson" was a registered sleep tech. He was. With the registration number he had given.

I couldn't find either James Stillwell or James Anderson on the ABRET (registered EEG techs) site:
http://abret.org/verify/credential-search/

To get around the ban imposed by the Forum Administrator, "Calist" apparently chose to start registering other nicknames. He continued to post under different names and continued to go into the chat room.

I think that is very unprofessional behavior.

I don't believe a sleep lab would approve of an employee engaging in childish antics on a support forum for CPAP users.

P.S. The person who posts using the registered nickname "Banned" isn't "Calist" by another name. The registered member nicknamed "Banned" is...himself...and hasn't been banned here.

rested gal wrote:P.S. The person who posts using the registered nickname "Banned" isn't "Calist" by another name.

Says who?

rested gal wrote: The registered member nicknamed "Banned" is...himself...and hasn't been banned here.

Yet.