ozij wrote:
If it were me I would want to understand:
What the doctor finds so confusing about my data?
How my diminished breathing capacity could effect the scoring of central vs. obstructive hypopneas (were both PSG and BIPAP titraton scored by the same persons?
Guess my thinking capacity is OK, since:
-SWS wrote:
http://www.mda.org/publications/Quest/q152sleep.html
Sleep studies valuable? ...
When respiratory muscle weakness causes nighttime breathing problems, it doesn’t take a polysomnogram to diagnose it, says John Bach, a physical medicine and rehabilitation specialist at University Hospital in Newark, N.J.
In patients with neuromuscular disease, Bach determines the need for ventilatory therapy by assessing symptoms and measuring exhaled carbon dioxide and vital capacity while the person is sitting and lying down. If those measurements don’t yield useful information in the clinic, he has patients do them at home overnight.
Patients showing signs of hypoventilation should be offered a trial of nocturnal ventilation, Bach advises, “and if they feel better using it, let them do so.”
Bach questions the usefulness of polysomnograms for people with muscle diseases because the test “interprets all abnormalities as central or obstructive apneas rather than muscle weakness,” he says — especially when read by physicians unfamiliar with neuromuscular disease.
This misdiagnosis then leads to improper treatment, he says.
rogelah wrote:So, he changed io a BIPAP titration and I went home excited. No headache. No feeling sleepy. I felt rested. We had found the Holy Grail! It was BIPAP! Imagine my surprise when they called to schedule a VPAP titration instead of telling me I was getting a BIPAP.
I'm relieved the sleep doctor no longer thinks of an ASV.
jnk wrote:I'm confused. Is it that the docs/RTs don't want to try the AVAPS thing, or is it that insurance dictates what is tried in which order, or is that part of the great unknown, or did I just miss that part of the discussion and need to reread more carefully
?
I think the reply to this confusion is here:
rogelah wrote:I am also suspicious of a possible linkage in the Lab to DME to ResMed triangle.
Thas is my suspicion too.
Now:
You've got an Rx for a timed bi-level machine - make sure you have it your hands. You felt great after the BIPAP titration.
Maybe a bi-level S/T will do the job for you, and by the time you need something else, you will have more choice in volume controlling machines.
Alternatively:
I would find out if the Respironics BIPAP AVAPS has a different insurance code from the any other BIPAP /ST.
I would ask my insurance about direct reimbursment on of what I buy.
I would ask cpap.com if a the presnet Rx is good enough for me buy an AVAPS with.
And depending on the reply -- and my means -- I would buy an AVAPS.
Even if I did not need a new Rx, I would try to get the lung doctor and neurologists support for an AVAPS, since that one can handle both your suspected sleep apnea, and hypoventilation. Unlike the sleep doctors, these two are your long term doctors -- I think they will be happy to help you get the more sophisticated machine once they understand how it can bridge both their specialty and sleep apnea.
Here's to hoping you'll have a bi-level machine soon, giving you the treatment you need.
O.
And now here is my secret, a very simple secret; it is only with the heart that one can see rightly, what is essential is invisible to the eye.
Antoine de Saint-Exupery
Good advice is compromised by missing data
Forum member Dog Slobber Nov. 2023