I signed up specifically to respond to your post, barbz. I am in a similar situation with the ASV. I've been 100% compliant with my CPAP, even for naps and use a dental appliance when I go camping, I have tried different masks, upgraded my machine, had titrated pressures, fixed pressures, added medication to help me sleep and still chronically drowsy. I am not willing to try surgery due to the poor pt outcomes and did not respond well to nuvigil to keep me awake and not too mention it is outrageously expensive. My original sleep study shows mixed apnea and yet I am only being treated for OSA. What other illness/disease is only partially treated? My MD even stated "you don't have enough central apnea episodes for insurance to approve an ASV." I've looked into buying my own machine but used ones are still $1,700 USD and some companies still want a prescription because it is a DME.
I am hoping someone reading this can recommend a specialist or pioneer in mixed apnea. I have also looked into alternative treatments and found an article today on phrenic nerve stimulation. I am not sure I want a device in my chest with wires and sensors that can malfunction. I can't seem to find any research on electro shock therapy to stimulate the nerves and desperate enough to sign up for a clinical trial. If this patient centered care movement is to truly take hold, MD's must spend more time with each patient to tailor the treatment rather than following a standardized treatment flowsheet and insurance companies need to let go of standardized criteria for approval of certain treatments.
