Comments from sleep specialist

Gillian: Follow First Reviewers advice!

Take care, Janice

Hi everyone. You are really all so caring, I have to say I have a bit of a smile on my face this morning even tHough I woke a min of 6 times last night and took a while to doze off again each time!

I have tried to include quotes in this reply but can't figure it out at this stage, sorry!

First of all to Herefishy - I have actually tried acupuncture but no success. Also a bit dicey when the pain condition is nerve related.
AVI 123 - Sorry if I am being dumb, but what exactly did you mean by 'treatment = zero. Are you saying I have had no benefit at all or are you looking at the leaks?
Stage O - I did ask the doc if I should increase the pressure but he said no. I do know that opiates can cause breathing depression but the experts disagree about how much. Of 3 specialists that I go to 2 don't think it is the physeptone and 1
Thinks its worth looking at.
First Reviewer and Jwerley -I do have another appt with him in six weeks but wasn't sure that I should go.
Mollete-(sorry, I'm not clever enough to type a heart??) Unfortunately I don't have the oximetry report, he didn't give me a copy. Do you think I should ask for it? Do you know what 16minutes means, is that too much? The doc just shrugged it off because he said there had been an anomaly and he didn't believe it anyway!! It only cost me $220. Thanks for your interest.
JNK - you always seem to be the levelheaded one with your comments, sort of feel I should be able to read more into them!
As you can see I don't have the report.
Khauser - agree about pain meds . I can't use NSSAIDS because they upset my stomach.

Now I am going to try and learn how to use those 'quotes'.

Have a good day everyone and once again thanks for caring!

Gillian

Make your observations known to your local medical malpractice attorneys. They may find it useful.

Gillian wrote: Unfortunately I don't have the oximetry report, he didn't give me a copy. Do you think I should ask for it?

Absolutely. The information will be critical (to either make or break the ASV case).

Gillian wrote:Do you know what 16minutes means, is that too much? The doc just shrugged it off because he said there had been an anomaly and he didn't believe it anyway!!

It would have to be 16 minutes of something, like "Time Below 90% Saturation".

I'd love to see the "anomaly".

Gillian wrote:. . . feel I should be able to read more into them! As you can see I don't have the report.

My only real point is that if Mollete is interested, I would go out of my way to get what information Mollete was asking to see.

I mean, if I had charts that looked anything like yours and Mollete said it looked very likely I could benefit from an ASV trial, I would try to hurry that along in any way I could. Mollete is not one of those who throw around the mention of ASV lightly, the way some do. When it comes to such matters, Mollete is the voice of reason and experience, in my opinion.

(Perhaps I should mention that Mollete was once very helpful to me on another board in discussing with me my thinking on the central component to the mixed apneas mentioned in my own diagnostic PSG.)

That said (Have I mentioned lately how much I miss seeing -SWS post around here?), I very much agree with those saying that you need to be in your doc's face about the matter. The doc works for you. Be the squeaky wheel. But also let Mollete help you get your ducks in a row with the data you can provide to make your case, if possible.

At least, that is what I believe I would do in your shoes.

Just to add about the oxygen deprivation for 16 minutes.

The overall damage will depend on how severe the oxygen deprivation was (how far down you were going) and how that 16 minutes is broken up. For example, shorter events spaced out over time won't be as bad as longer events that are clustered together.

From the graph you posted, it looks like you are having problems continuously all night long. So, not sure how the worst oxygen deprivation is spread out. But it looks like a severe problem, and your sleep must be horrible.

But even the mildest version is still 16 minutes of oxygen DEPRIVATION. Your heart, kidneys, etc are being deprived of oxygen for several minutes a night, every night. That adds up to damage over time.

Last summer, I let my mom use my machine for two partial nights since her older machine didn't have any data. The first night, I set the machine for straight 10, her prescription. AFter 4 hours, I took my machine back and uploaded the data so I could print a report before adding my own data to it. Her ahi was 3.4, not bad at all. Then I looked at the data. Hole crap. She had a cluster of events, 8 in 10 minutes, and one of them was over a minute long. Clear problem.

She called my sleep doctor the next day and made an appointment. Her second night on my machine, I set it for 10-13 to see what the machine wanted to do without letting it go too much higher than she was used to. My doctor looked at the two reports and her old sleep study report. He prescribed a new machine with full data and a setting of 10-15.

I would think that a sleep doctor would look at your graph and see that you need something changed.

Hi
Sorry still can't figure out the quotes!
Mollete: I will phone the surgery in the morning and see if they will email or post a copy of the report to me. Unfortunately I get rather upset in these situations and only thought about it afterwards. Surely if the test didn't look like a good one he should have suggested that we do it again! Damn I am annoyed with myself now.

Zoocrewphoto: That was what I thought. Everything I have read regarding oxygen levels has said any lows are bad and since this is my average more or less it is quite scary. I did ask him about side effects and he said there was no known problems in the long term. When I said that at 63 years of age I might not have too much long term, he just laughed!

JNK: You know the way things are with the medical profession these days thank God that we have people like these on this forum not able to help with data but also with encouragement and just general caring.





Cheers and thanks again everyone.

Gillian wrote:Hi

Zoocrewphoto: That was what I thought. Everything I have read regarding oxygen levels has said any lows are bad and since this is my average more or less it is quite scary. I did ask him about side effects and he said there was no known problems in the long term. When I said that at 63 years of age I might not have too much long term, he just laughed!

Do you mean side effects of oxygen deprivation?

Umm. headaches. high blood pressure, kidney problems, stroke, heart attack.

Gillian wrote:I will phone the surgery in the morning and see if they will email or post a copy of the report to me. Unfortunately I get rather upset in these situations and only thought about it afterwards. Surely if the test didn't look like a good one he should have suggested that we do it again! Damn I am annoyed with myself now.

No prob, we will get this fixed in short order.

We must also remember that he may be correct in his assessment, and should give him the benefit of the doubt (for about another 24 hours or so).

That said, if an xPAP report tells you one event line is bad, and you have so many event lines that they make a solid bar:



then something is Queer in Queensland, if you get my drift.

mollete wrote:...then something is Queer in Queensland, if you get my drift.

...or ecch! in Auckland.

Smells in Sydney?

jnk wrote:..Mollete is the voice of reason...

I think you should make that one of your famous "jnk Polls". I figure a 30/70 split at best.

Gillian wrote:I'm not clever enough to type a heart

Thanks Mollete, will see what happens on Monday.

Queer in Queensland......could get me into trouble here

Better stick to smells in Sydney!

Gillian

I would like to second:

a different doctor
and
acupuncture


I think that having a doctor who actually listens, and responds in ways that I understand, paramount! I have had doctors who ran the gamut from those who seemed to "blow me off" to those who paid attention, and I gravitate toward the latter, because I think I need a conversation about my health, not an oration designed to impress... or depress.

I have recently started acupuncture and find it be very useful in solving long-term pain issues. I have Cerebral Palsy and have endured much pain over the long haul, so even while the thought of pins and other (alternative?) medicinal techniques to be off-putting, I am glad that I allowed myself to try acupuncture.