Clapping during Sleep

[r0nwilliams]

I asked for an ASV, here is her response. What should I say to her?

[SarcasticDave94]

If me, "Which lung disease are we attempting to treat with the ST?"

AirCurve 10 ST
"The AirCurve 10 ST device is indicated for the treatment of obstructive sleep apnea (OSA) in patients weighing more than 66 lb (30 kg). It is intended for home and hospital use.

The humidifier is intended for single patient use in the home environment and re-use in a hospital/ institutional environment."

Versus ASV

"AirCurve 10 ASV indications for use
The AirCurve 10 ASV device is indicated for the treatment of patients weighing more than 66 lb (30 kg) with obstructive sleep apnea (OSA), central and/or mixed apneas, or periodic breathing. It is intended for home and hospital use.

The humidifier is intended for single patient use in the home environment and re-use in a hospital/ institutional environment."

Both quotes from ResMed clinical guides for respective machines, with my highlight of bold and color in the specific difference being ASV treats Central Apnea while ST does not.

So you could try again. "Will you prescribe or even discuss ASV with me? ResMed recommends ASV to treat CA, why won't you? Do you actually know how to treat Central Apnea?"

Pick whichever portion you'd like, or the whole quote. I get the feeling this doctor A. doesn't know how to treat CA, B. doesn't see CA as an issue with you, that doesn't affect her, C. demands treatment be done her way only dictator style, D. all the above.

Best solution, fire and replace Dr. Clueless. Get another doctor to script ASV, buy and get treated.

[Sleeprider]

Once again, refer back to this reference. Send this moron the intended use of each device. Let them know if they can't figure out how to dispense an appropriate device for your medical needs, it will be necessary to find someone competent that can. https://www.resmed.com/us/dam/documents/...er_eng.pdf

[r0nwilliams]

it's frustrating, she's the professor that is the head of NYU Neurological Sleep Center, which I went specifically for all my parasomnias, but she has gotten more and more unresponsive the more and more informed that I have gotten.  I feel like she rolled her eyes at me when I asked if she was familiar with Oscar.... like Oh great another know-it-all patient...  

It took me a whole year to find a mask that fit that didn't have a massive leak, because I didn't know that there were more than the three she had in her office.

I also think there is another bias that most doctors have treating me, in that I am in recovery, 3 years now, treated with Suboxone.  I know my CA's are definitely worsened from Suboxone (and other medications), and I have been withdrawing verrrry slowly off of it, but it's a difficult balancing act, because I know untreated addiction will kill me much more quickly and definitely than apneas.   

But on the other hand, I have had crazy sleep behavior from before I was ever an addict.

I am going to make an appt with another doctor.  Should I look for a dr that is also pulmonologist?

[Sleeprider]

The more egotistical the doctor, the less your opinion and input counts. Time to change back to your primary doctor who will listen to you, understand the references you provide and use the test results from Mayo to make the right treatment decisions. I have never used a sleep specialist as a treating physician. It's a recipe for abuse. If you have a good working relationship with your primary doctor, that is all the specialist you need. If you continue to have parasomnia, see a neurologist or behavioral psychiatrist. Parasonia is a sleep disorder, but not sleep disordered breathing. Your current specialist is probably unacquainted with the options to treat this, or like most specialists, when if it looks like a nail, just hit it with a hammer (if it is a sleep disorder use PAP). The whole sleep medicine business has somehow forgotten that treatment of sleep disordered breathing is often common sense, and evaluation of therapy is trial and error. If a problem is unrelated to respiration, stop trying to treat it like apnea.

[SarcasticDave94]

She's to caught up in her lofty position to help you.

Like Sleeprider said, try your Primary Care. If this is not really related to Apnea, it's malpractice for them to treat it as if it is, if it truly isn't related.

Fire and replace with Primary Care if possible.

[r0nwilliams]

When I sent the resmed treatment guidelines and asked about why she wouldn’t give ASV, she said “Because we're not treating central sleep apnea. We're treating hypoventilation”.

But couldn’t I respond to her “but didn’t you diagnose me with TECSA that was unresponsive to pap/BiPAP in my sleep study? and that neither of the studies showed successful treatment, so how do you know what you are treating??”

Is my wording accurate?

Also, if do the oscar graphs that I have posted above zoomed in to my events, do they clearly show CA? For example,
The last oscar I posted from 6/4/24 where there are three events shown, are they very clearly CA? Can you differentiate TECSA from CA? Can one of you explain what is happening in those events to me so I understand?

Is there anything in my oscar data that I could say to her or my next doctor; “Here is why I don’t have hypo, and here is showing unsuccessful treatment.” ?

I want to not only refute her (if nothing but for my own satisfaction), but also, i need good data to present to tge next doctor bc doctors in general are so hesitant to contradict another doctor’s diagnosis or treatment plan, especially if they are a well know “specialist”

[SarcasticDave94]

Unfortunately, she very likely will not recognize OSCAR charts as authentic and probably will not even look at them, dismissing them as useless. They're not, but to her self inflated opinion, since they're not "official" ResScan documentation.

I would further say she's tuned out your input. You're likely going no further here. "Her way or no way" because her medical ego prevents this.

[Sleeprider]

Mayo, no good for you. Find someone with more of a "science" open-minded approach. These people are all about themselves.