Frustrating but don’t give up. Doctors are people too i.e.) make mistakes and cover them up. However, there is NO centralized way to hold doctors accountable! How is that?? Maybe get another PSG, tape it yourself. My story:
Prior diagnosed with Sleep Apnea and severe PLMD. Am much worse now in terms of EDS. So, I had a recent PSG. In approx 4hrs sleep period I had: 40 awakenings; 89 arousals (83 unspecified/“spontaneous”, 6 CSA related (“0” CSA’s last PSG 10mo ago), AI=20.9/hr); sleep efficiency 59%; approx. 70% N2 sleep, 0% N3; 108 sleep transitions (>13/hr is severe/extreme, mine=27.7/hr), 29 PLMS, PLMI 7.5/hr (mild - likely due to undercounting and/or archaic parameters); “spontaneous” arousal index of 20.9/hr. Physician, embarrassed by the news that I took my own video at PSG, refused to watch 2, 2.5 minute videos (each 20 min at 10x speed) showing repetitive, almost continuous PLMS with arousals. Study tech said their equipment can be viewed at 2X (as in, wow!) so will pick up even the tiniest movements (lol). Asked physician and she has no interest in determining cause of “spontaneous” arousals. Now diagnosed with Sleep Apnea only. Only change was a slight reduction in pressure. Now my wife and kids just think I’m lazy.
You, me, us….deserve better. I encourage everyone to take their own videos of their PSG to keep em’ honest by letting them know and requesting PSG RAW data. I sympathize with over-worked health-care staff but providing lower-quality care cannot be the answer that we accept. Right?
I attempted to get my PSG RAW data from OHSU Sleep Lab 10mo ago. First, they didn’t have the records at the “main” medical records storage. Wiping their hands clean (“I don’t know what else we can do for you here” (at medical records)) so she “suggested” that I call the OHSU Sleep Lab and request from that clinic directly (illegal for a lab tech to do this). Lab tech said the data was in a special “proprietary” ResMed format for which there is no available consumer/patient software. Had no suggestions other than contacting my doctor. Contacted doctor directly who, usually being responsive, deleted my message in MyChart (I luckily found it in the “deleted” folder weeks later providing person who deleted it)
I am going to request PSG data from the recent PGS described above. If I get the same answer, in reading HIPPA regulations in the US, this appears to be a violation of HIPPA rules which require the medical records to be provided and, to be provided in a format that can be easily accessed and understood.
It simply appears that ResMed and medical providers are breaking the law. They’ll probably claim that they are protecting “proprietary” licensed software. Unfortunately, this is not a valid legal argument to justify the withholding of medical records from patients.
Possible class action!? I’ll post if it happens. I am determined but encouragement welcomed