Sleep Study Done - Update

Finally the sleep study is behind you. I really don't find the RT's use of the word "interesting" to be ominous at all, rather that there are some answers that may be gleaned from the study that might lead to improved settings. And not using the vent is a good sign too. Just wondering, is the 7-14 day wait for results because of the lab's processing schedule or is it because your Dr may not get back to you before then? Actually it may be a good thing if there is no "rush" assigned to it. Stay positive friend!

I am just disappointed for you that they didn't even try the ventilator. That is what you use, that was one of the reasons for this study.

You do not really have to be asleep, or sleep deeply for the test results to be valid, and useful in getting you into successful treatment.

Did you try several different masks?

In my sleep study each tech had several patients to watch. Which relates to interpreting the tests.

Two highly qualified people (usually the MD's) must score each test in thirty second intervals and then all that info compiled. I missed in your post whether this was also a titration as well as the diagnosis test? I was told each persons test took two hours of devoted concentration to score. You saw the number of patients and can guess the number of hours for each night of the week. I guess most sleep clinics work all seven nights a week.

You said you woke up mid dream. Dreams, or REM sleep are a sign of deep sleep. Deep sleep is one of the things which many of us did not much have before CPAP therapy. Did you frequently have dreams before the night of the test?

My first sleep test I could feel the improvement in my mind, clarity of thinking, feeling good. And I only had deep sleep for part of the night.

CPAP treatment is a life changing, improving treatment that is spectacular. I love my Sleep Apnea machine.

BlackSpinner wrote:I am just disappointed for you that they didn't even try the ventilator. That is what you use, that was one of the reasons for this study.

I'm okay with them not using the ventilator because the Omni-Lab Equipment was doing AVAPS which is what I use now. The order was pretty specific about using AVAPS and tweaking those settings (within parameters set by my doctor) and if that didn't work, then to switch over the ventilator in SIMV and/or AC modes.

I think a part of my mood is that I am almost positive (can't be sure because he wouldn't answer any questions) that he switched me to regular bipap at one point. Maybe AVAPS was still going, but I AM positive there was no backup running for a while. When you think about how much I've been through, I have concerns that they'll argue that I don't need anything but basic bipap, which can work okay on a single night. But long term, night after night, a basic bipap does not work for me.

Probably a totally groundless worry on my part, but in my defense, I'm exhausted. Once I'm rested, I figure I'll feel better about everything, knowing my doctor is smart enough (and experienced enough) to evaluate my entire situation and not make any radical equipment changes without careful consideration, which is all I could ask for.

purple wrote:You do not really have to be asleep, or sleep deeply for the test results to be valid, and useful in getting you into successful treatment.

Did you try several different masks?

In my sleep study each tech had several patients to watch. Which relates to interpreting the tests.

Two highly qualified people (usually the MD's) must score each test in thirty second intervals and then all that info compiled. I missed in your post whether this was also a titration as well as the diagnosis test? I was told each persons test took two hours of devoted concentration to score. You saw the number of patients and can guess the number of hours for each night of the week. I guess most sleep clinics work all seven nights a week.

You said you woke up mid dream. Dreams, or REM sleep are a sign of deep sleep. Deep sleep is one of the things which many of us did not much have before CPAP therapy. Did you frequently have dreams before the night of the test?

My first sleep test I could feel the improvement in my mind, clarity of thinking, feeling good. And I only had deep sleep for part of the night.

CPAP treatment is a life changing, improving treatment that is spectacular. I love my Sleep Apnea machine.

Purple, I truly appreciate the input. I realize you aren't familiar with me or my situation. I did my basic diagnositic/titration studies in Nov 2009, but failed on both cpap and bipap and am currently using a ventilator in S/T Mode, with AVAPS (I have a progressive, neuromuscular disease that has weakened my diaphragm muscles). The study done last night was to try to ascertain IF AVAPS was working sufficiently and to try to figure out why I wake up so much and don't feel as rested as I should.

Because my sleep lab's ventilator does NOT do AVAPS, we worked with Respironics to have other equipment brought in to the lab that could do AVAPS, thus trying to duplicate, as closely as possible, what I do at home. That included my bringing my mask since that is a key element to what goes on night after night.

I do appreciate the input and not knowing my history, it was absolutely correct!

I've been following your posts. Congrats on getting this far! You have really hung in there. I'll bet that you will get some definitive answers.

Madalot wrote:But being this tired is never good for your mood

You got that right, sister. I hope you feel better in the morning after a more peaceful sleep.

I would have to agree with the others that taking the word "interesting" as ominous is not helpful, and indeed may indicate something good.... interesting information is frequently useful information. But whether it was interestingly bad or interestingly good information, trying to interpret what someone else said is a lot like mind reading. That being said, waiting sucks. I hate that you have to wait so long. Not knowing would drive me mad. Try not to live up to your name.

I am following and hope for a good outcome. I guess different sleep labs seems to have different rules. My tech was very friendly and in the morning showed me his work station, and the results, explained some of the date to me, and pretty much predicted what I would be prescribed. Maybe they get more tight lipped when the doctor or the insurance company insists. Again, hoping for a good outcome.

snuginarug wrote:

Madalot wrote:But being this tired is never good for your mood

You got that right, sister. I hope you feel better in the morning after a more peaceful sleep.

I would have to agree with the others that taking the word "interesting" as ominous is not helpful, and indeed may indicate something good.... interesting information is frequently useful information. But whether it was interestingly bad or interestingly good information, trying to interpret what someone else said is a lot like mind reading. That being said, waiting sucks. I hate that you have to wait so long. Not knowing would drive me mad. Try not to live up to your name.

LOL -- about the name.

I agree that trying to interpret what he said is mind reading and that's a skill I don't have! LOL I'm "irritated" I guess because he was SO appreciative (the night before) about my involvement in my care and the knowledge that I have. He was shocked that he could ask me questions about my situation and therapy (detailed questions) and that I knew the answer. He said I was the first patient he'd had, in over 20 years doing this, that had cared enough about their situation to learn as much as I had. He, like my RT, said that he wished more patients would care enough about their therapy to learn and become knowledgeable enough to help with their treatment.

That's why he agreed to at least tell me what he had done the night before. I promised him I understood his restrictions and no matter what he said, I would continue with my therapy, as is, until my doctor got the information and evaluated it. I assured him that I did not take my treatment into my own hands, but was very interested in anything he could tell me so that I didn't have to wait 7-14 to hear something. And that's why he agreed to at least tell me what he did because he knew that I most likely would understand it.

It irritated me that for whatever reason, he changed his mind about giving me even the smallest amount of information. I'm trying to see it from his perspective and think that perhaps he was worried that *I* would "throw him under the bus" and decided it wasn't worth risking it. I can understand and respect that, but it doesn't change the fact that I am still irritated.

I suppose I'm just overall irritated right now. I've been trying to ask my neurologists a very simple question about a possible disease because there is a study being done where *IF* this hasn't been considered for me, I can participate and be tested for it. The research study IS just being tested. Nothing more. My question is basically -- have they considered this disease and if they haven't thought about it and/or ruled out, would this be a good avenue for me (getting tested through this study).

This is one of the few diseases under the Muscular Dystrophy umbrella that actually has a TREATMENT. I've spoken with the people conducting the study and they say my symptoms are typical for people with this disease, but have been misdiagnosed.

I don't understand what is so complicated about this. Two and a half months later, I can't get a simple answer. The first "answer" I got was an automated email indicating I had been scheduled for an appointment with my neurologist in September (my yearly appointments are January). No explanation for it -- nothing. And yes, I've called and asked, but his staff has no clue as to why he moved me up by four months and he's been out of the office.

It shouldn't be this complicated (or difficult) to get information or simple answers to simple questions.

But since it IS this complicated and difficult (and I can't change that), I'd be better off just accepting it.

Ahhh, Maddie, its good that you like your doctor so much 'cause on accounta "this" is the time period where I REALLY get ticked off at the entire medical profession in general. I am NOT a patient patient and VERY LITTLE ticks me off more than not getting TIMELY (like yesterday *wicked grin*) answers to my questions - or test results. (((hugs)))

Slinky wrote:Ahhh, Maddie, its good that you like your doctor so much 'cause on accounta "this" is the time period where I REALLY get ticked off at the entire medical profession in general. I am NOT a patient patient and VERY LITTLE ticks me off more than not getting TIMELY (like yesterday *wicked grin*) answers to my questions - or test results. (((hugs)))

Thanks, Slinky (and everyone else that I may not have answered personally).

Part of my problem is that while I don't like it, I DO understand why medical professionals behave the way that they do. It's the "one bad apple spoils the whole bunch" concept in that because some patients react/over react, medical professionals are erring on the side of caution and withholding information longer than is necessary for many people. I don't LIKE it, but I understand it.

In my situation, it would have been really nice for the tech to at least tell me how he adjusted the settings, especially considering how much he seemed to appreciate my knowledge and understanding. Plus, I am a very "aware" patient and I could feel things during the study that I would have liked to ask him about -- like, did you disable the backup rate for a while and if so, why? I am almost 100% positive that he did, but couldn't ask him about it because he wouldn't answer it anyway.

It's tough when you're a patient like me that has a basic understanding AND is very aware of even subtle changes in the therapy.

Madalot wrote: In my situation, it would have been really nice for the tech to at least tell me how he adjusted the settings, especially considering how much he seemed to appreciate my knowledge and understanding. Plus, I am a very "aware" patient and I could feel things during the study that I would have liked to ask him about -- like, did you disable the backup rate for a while and if so, why? I am almost 100% positive that he did, but couldn't ask him about it because he wouldn't answer it anyway.

It's tough when you're a patient like me that has a basic understanding AND is very aware of even subtle changes in the therapy.

What probably happened was at the beginning of the night he thought he knew what was happening and realized during the actual night that things were much more complex then he assumed. He was probably scared stiff to open his mouth in the morning.

I can only imagine, Maddie. I'm praying for some effective answers for you!!!

BlackSpinner wrote:

Madalot wrote: In my situation, it would have been really nice for the tech to at least tell me how he adjusted the settings, especially considering how much he seemed to appreciate my knowledge and understanding. Plus, I am a very "aware" patient and I could feel things during the study that I would have liked to ask him about -- like, did you disable the backup rate for a while and if so, why? I am almost 100% positive that he did, but couldn't ask him about it because he wouldn't answer it anyway.

It's tough when you're a patient like me that has a basic understanding AND is very aware of even subtle changes in the therapy.

What probably happened was at the beginning of the night he thought he knew what was happening and realized during the actual night that things were much more complex then he assumed. He was probably scared stiff to open his mouth in the morning.

Also, there's the matter of license. In most US states, "providing diagnosis and treatment" is practicing medicine. If a tech tells you a diagnosis or recommends a therapeutic maneuver, and there's any adverse result, he (and the company he works for) could be construed––in a lawsuit for example––as having engaged in the unlicensed practice of medicine. So diagnostic labs generally forbid employees from doing that.

BlackSpinner wrote:What probably happened was at the beginning of the night he thought he knew what was happening and realized during the actual night that things were much more complex then he assumed. He was probably scared stiff to open his mouth in the morning.

I think that when people hear "We've got a patient with muscular dystrophy coming in. She uses a power wheelchair and a ventilator" they get an image in their minds, which I understand. The reality of my situation can't be explained in those two lines. Yes, I use a powerchair, but I CAN walk some and use the chair to conserve energy for the times that I NEED to walk. Like Monday night, we went to a grocery store (they have something there that I can't get at home), out to dinner, to the hotel to get hubby settled, then over to the sleep lab. I used the powerchair until I got to my room in the lab, where I got out and walked using a cane. I used the chair until then to conserve my energy to make it possible for me to safely navigate the room on foot. But after the image is his mind, this probably shocked him, figuring I couldn't walk at all.

I think the AVAPS/ventilator directive gave him an image and the reality was nothing like he expected. I suspect he was envisioning a horrific night with all kinds of complications and problems (from me as a person as well) and the reality of it was so much better that it surprised him.

I received an email from my doctor today saying that my study results should be available Friday (tomorrow) for her to review. I might get lucky and hear something tomorrow, but it could be Monday or Tuesday. But that's still faster than I was expecting...

So, we wait. Patiently.

In the meantime, my daughter decided to "share" her horrendous cold with me, so I'm being very diligent about using my machine because it DOES help and makes things better.