Sleep Study Results - Hmmm...

Hell, yeah! You find a great doctor AND a great RRT .... and the freaking facility is so rigid they hamper the doctor and RRT left and right. Yeah, I'd be frustrated, I'd be madder than hell .... and wear myself to a frazzle being so.

So, take a deep breath as you are doing, set back and recoup. There's always another day.

How far are you from National Jewish in CO? I can't remember who it was to dig out a link to some of his old posts, but we had a member a couple of years ago w/a unique "breathing" problem, due, I think I remember, to something other than pulmonary and I believe he was from CA and had been thru the "best" there, went to National Jewish and got some REAL EFFECTIVE RESULTS. Maybe RG will remember ..... or have a link stashed ....

I'm sorry, its more than a bit early to toss that one at you ... file it away to ponder "someday" .. when you are ready.

Slinky wrote:How far are you from National Jewish in CO?

Too far I'm afraid. I'm in Southern Virginia so Colorado is kind of out of the question.

I have other options, but in order to use them, I have to risk my relationship with this pulmonary doctor, the one that all my neurologists tell me to stick with, mainly because she specializes in non-invasive ventilation for people like me.

I really need to think about how to approach this, but I think I need to let her know how I feel about how this study went. But I need to be very careful about how I do it.

Too much for my frustrated and weary self right now. I probably can't get to her before Tuesday anyway, so I've got a few days to figure it out.

There are times when being careful is overrated...

I think you should feel free to rant and rave to your doctor as much as is needed to get the point across that you are not receiving effective treatment. The key is to rant about the issues only. If you make it personnel, your doctor will drop you like a hot potato. However, if you blow up about the "issues," you may get everyone to focus on what the actual problems really are.

I think it is normal to feel frustrated. It may help to discuss these frustrations - again - with your doctor to make sure everyone is on the same page. As long as you don't point fingers and try to lay blame on anyone, things should go well.

Now, if you walk in and blame the doctor, blame the sleep lab, blame the technician, and so on, all bets are off. I would also caution against blaming yourself. There is a puzzle here that needs to be solved. Take it one step at a time.

HoseCrusher wrote:There are times when being careful is overrated...

I think you should feel free to rant and rave to your doctor as much as is needed to get the point across that you are not receiving effective treatment. The key is to rant about the issues only. If you make it personnel, your doctor will drop you like a hot potato. However, if you blow up about the "issues," you may get everyone to focus on what the actual problems really are.

I think it is normal to feel frustrated. It may help to discuss these frustrations - again - with your doctor to make sure everyone is on the same page. As long as you don't point fingers and try to lay blame on anyone, things should go well.

Now, if you walk in and blame the doctor, blame the sleep lab, blame the technician, and so on, all bets are off. I would also caution against blaming yourself. There is a puzzle here that needs to be solved. Take it one step at a time.

You're right and the only thing I AM angry at my doctor about is her refusal to let me use another sleep lab. In her defense, I think she just doesn't know that she can probably get everything she wants from ANY lab, not just the one she's affiliated with.

I had called a sleep lab locally and on the phone, they were very open and willing to help me however they could, even saying that getting my ventilator in to do the study wouldn't be any problem at all. But my doctor shot that idea down, stating she would only get a summary and wanted to see the actual data.

We HAVE treated some of my problems. As long as I stay on my side, my breathing is usually okay (not always, but usually) and my oxygen levels stay above 90% most of the time. So, from their perspective, I'm effectively treated, which I understand. The awakenings are bothersome, but I could live with that. But the daytime fatigue, which is worsening, is very problematic for me. I've gotten to the point where if I have something to do (like pay bills or balance a checkbook) I MUST do it in the morning because by afternoon, I can't do it. I made the mistake a few days ago of trying to balance my checkbook after lunch. First off, I grabbed the wrong number as the ending balance on the statement and was almost $1000 off. I DID find that, but then I was 20 cents off and I couldn't find it to save my butt. I said the heck with it and left it. I found it within about 2 minutes the next morning.

I still believe that there are settings that would work better and solve these problems and simply do not feel that they were trying to address the right things.

But I agree that I need to be very careful *IF* I decide to keep trying.

The issues I would rant about to the doctor are:
Why do I keep waking up at night?
What can be done to fix that?
Is there anyone in sleep medicine whom you trust to analyse the data from the point of view of what is causing me to wake up?
The quality of my waking day is deteriorating - I believe it has to do with my waking up at night - is there really nothing to be done about that?
How can we tell the difference between the impact of my disease on my waking life and the impact of interrupted sleep?

I would also try to have a face to face discussion with her - or the neurologist or both - about the progression of the disease.
In order to handle whatever it is life is throwing at you, you and your team have to be very very clear about what is inevitable and what is not.

I give up. I don't know what it is w/this cpaptalk "forumware" but it has refused my reply post 3 times again. Every now and then it does this lately.

Slinky wrote:I give up. I don't know what it is w/this cpaptalk "forumware" but it has refused my reply post 3 times again. Every now and then it does this lately.

Are you putting in characters that could be interpreted as html commands (like "/"s)? Sometimes (but obviously not all the time) it don't like that.

either/or
/end
//
c:/
/format
/delete everything
/destroy planet

Hmmmm. I forgot what it was that did that....

ozij wrote:The issues I would rant about to the doctor are:
Why do I keep waking up at night?
What can be done to fix that?
Is there anyone in sleep medicine whom you trust to analyse the data from the point of view of what is causing me to wake up?
The quality of my waking day is deteriorating - I believe it has to do with my waking up at night - is there really nothing to be done about that?
How can we tell the difference between the impact of my disease on my waking life and the impact of interrupted sleep?

I would also try to have a face to face discussion with her - or the neurologist or both - about the progression of the disease.
In order to handle whatever it is life is throwing at you, you and your team have to be very very clear about what is inevitable and what is not.

You bring up valid points, Ozij (but you usually do). I believe there's a high likelihood that the pressure is what is waking me up and if that's the case, it's a catch-22. There may not be anything we can do because it's fairly obvious that a certain amount of pressure is needed for my situation and if I'm sensitive enough that I wake up, what can they do?

As far as the course of my disease, that's one of the biggest problems I have right now. They do not know exactly what disease is plaguing me. They know it's a neuromuscular disease (Muscular Dystrophy) of some sort, but cannot pinpoint which one.

Some researchers are theorizing that people like me, diagnosed with Limb Girdle Muscular Dystrophy (my 2nd diagnosis) or Mitochondrial Myopathy (my current one) actually have Late Onset Pompe Disease. A university is doing a research study on this and I've been accepted into the program to be tested. It's a simple bloodtest to see if I carry a specific enzyme for the disease.

The man handling the study said that my symptoms (especially respiratory issues) are CLASSIC for people with this specific disease. The best part of it is -- there's a treatment to stop the progression. The treatment won't change what is, but frequently stops any further progression of symptoms.

Anyway -- I think a frank discussion, not via email, with my doctor is probably necessary now. The wakeups are annoying, but the daytime fatigue is turning me into an invalid (more so than I already am).

Slinky wrote:I give up. I don't know what it is w/this cpaptalk "forumware" but it has refused my reply post 3 times again. Every now and then it does this lately.

I'm sorry Slinky. It upsets me because I WANT to hear what you have to say...

Shall I get out my cane and smack the forum?

Because of this "stay off your back" directive, I have been VERY aware the last couple nights about what position I am in when I wake up. I have NOT been on my back ONCE. I got frustrated once last night and thought about laying on my back for a while, but decided against it. I am waking up enough to be aware of my position and staying off my back is NOT going to require a tennis ball.

I went to bed late last night (1am'ish). I did my typical where I masked up, double checked the leaks, got all settled and turned on my left side (I do this every night). I woke up a bit later (still on my left side) gasping and barely able to breathe. Plus, I had drooled enough that my face was wet (yuck).

It was 1:19 when this happened. I told the tech that this same thing (sans the drool) had happened the night before I came in -- my waking up shortly after going to sleep, gasping and such.

Those first two hours during the study, in my preferred position (left side), the backup rate was bothering me and I never got into a good sleep, thus when I got irritated and turned on my back.

It's too bad he couldn't see that awakening/gasping for himself. This is a newer problem and may be a clue to this puzzle. Too bad we didn't spend much time addressing the real problems.

Actually...

The data may be there.

Squinting at your graphs, I detect a change in O2 levels just prior to waking. You may be able to look at the ECG and respiratory effort graphs and find a correlation.

If that correlation exists, point it out to your doctor and ask why this happens just prior to waking events.

Another interesting observation is that when you enter REM sleep your legs and arms start moving. Is this another piece of the puzzle, or was it too hot and you finally got around to trying to kick the covers off...

You may want to have a serious discussion with your body. It is beginning to look like when you finally get into REM sleep your body celebrates by doing the "Hoochy Coochy" and this wakes you back up...

HoseCrusher wrote:Actually...

The data may be there.

Squinting at your graphs, I detect a change in O2 levels just prior to waking. You may be able to look at the ECG and respiratory effort graphs and find a correlation.

If that correlation exists, point it out to your doctor and ask why this happens just prior to waking events.

Another interesting observation is that when you enter REM sleep your legs and arms start moving. Is this another piece of the puzzle, or was it too hot and you finally got around to trying to kick the covers off...

You may want to have a serious discussion with your body. It is beginning to look like when you finally get into REM sleep your body celebrates by doing the "Hoochy Coochy" and this wakes you back up...

Interesting...and no, it was not hot so I did not kick off covers. I think it's very interesting that any respiratory events were supine and I was supine because he made me. I see what you're saying that both times I hit REM sleep, I started having limb movements.

I also notice that the first time I went on my back (my choice), there were NO respiratory events, so why he got so focused on putting me supine to prove respiratory events is a mystery to me.

I also see that for that first two hours of the study when I WAS on my left side, I was awake a lot (which I knew) and rarely got deeper than N2, and I got irritated and turned to my back (which I wish I had not done).

If I had to guess -- I'd say that pressure wakes me up while on my side (sometimes) making it difficult for me to get into a good, deep sleep. And once I finally do get into a deep sleep, limb movements are bothering that sleep and I'm waking up from that.

Any takers on this?

As far as the data, I don't have a lot of hope of being able to get it. My sleep lab seems resistant to admitting it even exists...

Slinky wrote:How far are you from National Jewish in CO? I can't remember who it was to dig out a link to some of his old posts, but we had a member a couple of years ago w/a unique "breathing" problem, due, I think I remember, to something other than pulmonary and I believe he was from CA and had been thru the "best" there, went to National Jewish and got some REAL EFFECTIVE RESULTS. Maybe RG will remember ..... or have a link stashed ...

The person was dllfo.

No link stashed, but Googling for dllfo Jewish site:cpaptalk.com turns up a lot of his posts about his trip to Colorado.

I'm going to try ONE MORE TIME!

First off, this IS the USA, that data IS part of your medical records, you DO have a LEGAL RIGHT to copies of that data under HIPAA. Whether you opt to exercise that right is YOUR choice.

WRITTEN REQUEST, CERTIFIED MAIL, RETURN RECEIPT REQUESTED. If a second request is needed it is cc'd to HIPAA and copies sent to both HIPAA and to the hospitals medical records department AND the sleep department as well. And at this point I would include a request for a CD or DVD of the full night of raw data from that sleep study. They will NEVER convince me that a hospital sleep lab can not provide such a copy. That is how they store that data for their own records!!!

That CD or DVD can be submitted to another sleep doctor for analysis for a second or even third opinion.

I would contact that sleep lab that was so willing to work with you that your doctor preferrred you not use and have a study done there with a thorough discussion before hand as you've tried to do w/these jerks at the current hospital's sleep lab and I would ask if THEY could and would put it on a CD or DVD to submit to your sleep doctor as well. That would get you a second opinion AND I would guess that THEIR sleep doctor would be especially up on his or her toes knowing that another sleep doctor would be looking at that raw data too.

But then I'm not as tired and exhausted and discouraged as you are right now - and I'm a crochety ole broad who gives the medical profession no quarter when they thwart me!!!

Now watch, just because I copied and pasted this message to Note Pad, its going to go thru! Actually I was more thorough in my original 3 messages but I'm bored w/what I have to say by this time.

BLESS YOU, RestedGal!!! I just KNEW we could count on you to find it!!!!!

Madalot wrote:I had called a sleep lab locally and on the phone, they were very open and willing to help me however they could, even saying that getting my ventilator in to do the study wouldn't be any problem at all. But my doctor shot that idea down, stating she would only get a summary and wanted to see the actual data.

She was (and is) very mistaken in her notion about the amount of data another sleep lab would provide her, even all the way to letting her have a CD of the raw data, every single epoch recorded during the sleep study -- and the software to view it -- if she wanted to see that amount of detail. Not that she, or any doctor not board certified in "sleep medicine," could understand PSG raw data.

I think she would have received all/more "actual data" than she could possibly want to see -- especially from a sleep lab that was "willing to help me however they could" and that said "getting my ventilator in to do the study wouldn't be any problem at all."

But that's water under the bridge.

Doctors are human.

Humans can be stubborn about misperceptions.