RE: Would I benefit from an ASV?
My head is at least 6" from flat when I lay down. Makes MRIs fun.
Originally only my lower back was affected, but then about five years ago my mid back seized up and it really impacted my exercise. Walking jars my entire body now, so the treadmill is a thing of the past.
I did not get diagnosed for at least 25 years, too late for the biologics to do me any good. There was a couple of years around 30 where I could barely walk, as stepping off a curb or lifting five pounds would cause a new level of pain. After two years of pain killers, muscle relaxants and NSAIDS it just went away. I think the lower vertebrae finally just fused. I even lifted weights for ten years, until the stiffness got to me. It's attacking my Neck now.
The thing that bothers me most is when people tell me to stand up straight, especially if they know I have AS. I just want to B-Slap them,
RE: Would I benefit from an ASV?
All sounds horribly familiar, though it sounds like you're worse affected than me. Still I probably had 15 years of more or less constant pain, with the occasional severe pain just from ordinary daily activities if I wasn't careful.
My Doctor told me eventually the pain would go away as most of the moving parts of the spine would seize up. And he was correct up to a point. I still get chest pain of various types, especially if I sneeze. I've been living with it now for 30 years I guess so I don't notice it unless I need to turn my head when driving.
RE: Would I benefit from an ASV?
It affects everyone differently, my SIL has it and it has ruined her vision.
Other than my early symptoms and the odd pinched nerve, I have been fairly luckily until the last five years. I don't really have a lot of pain now, but mobility and stiffness are another story. It's attacking my peripheral joints now, shoulders, knees, etc..
05-12-2022, 05:53 AM
(This post was last modified: 05-12-2022, 05:54 AM by LarissaH.)
RE: Would I benefit from an ASV?
(05-10-2022, 05:05 PM)Sleepy Willy Wrote: I'm wondering if I would benefit from an ASV machine and if my pressures are appropriate?
Your download looks more like severely disturbed sleep, with the OAs either misidentified CAs or SWJ. A breath-by-breath review is needed.
You must have had a PFT. What are those results? Include FVC and diffusion please.
Very unlikely an ASV would help. Most sporadic or isolated centrals need to be left alone.
What are your resting and exercise oxygen saturation values?
RE: Would I benefit from an ASV?
The report from last year did not mention any of the detailed results, but they had declined from 2020.
The 2020 results were:
FEV1 1.57
FVC 2.44
Diffusion capacity 94%
Resting O2 is about 91%
A recent walk test had O2 at 87% after 3 minutes.
RE: Would I benefit from an ASV?
IIWY I'd get the results from last year to track exactly how rapid the deterioration is. Include age and height to determine what the %Predicted is.
IMO BiPAP-S is the appropriate mode. At some point in the future you might want/need to get a little more aggressive, something like S/T, iVAPS, AVAPS (although "Respironics" appears to be one of the 7 Words You Can't Say On AB).
Have you had an Arterial Blood Gas done? Or electrolytes including -HCO3? Will they monitor ETCO2 or TcCO2 during your sleep study?
RE: Would I benefit from an ASV?
(05-13-2022, 05:37 AM)LarissaH Wrote: (although "Respironics" appears to be one of the 7 Words You Can't Say On AB).
Obviously not.
But if you approve of a company that has essentially every machine it has built since 2015-2021 under recall, and where on it's newer machines, the DS2s, have the data encrypted so as to prevent anyone without their Orchestrator software, which is limited only to medical personnel and not available to PAP users, then I strongly disagree with your opinion.
RE: Would I benefit from an ASV?
(05-13-2022, 06:43 AM)Gideon Wrote: But if you approve ...
I neither approved, nor disapproved.
RE: Would I benefit from an ASV?
2020
FEV1 - 38% Predicted
FVC. - 45% Predicted
ABG was a while ago, PAO2 was 64%
No idea what the sleep tests will entail. I'm on a cancellation list, so I don't imagine I will have too much say/choice.
RE: Would I benefit from an ASV?
(05-13-2022, 10:07 AM)Sleepy Willy Wrote: No idea what the sleep tests will entail. I'm on a cancellation list, so I don't imagine I will have too much say/choice.
This is something you need to take care beforehand. Ask specifically "Do you think it would be a good idea to monitor my CO2 during testing?"
If your PFTs sucked back then they must REALLY suck now.
If your physician or whoever starts treating you like some second-class citizen, do what I do. Look 'em square in the eye and ask:
"Who do you think is the most important person in the room right now?"
