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+--- Thread: New User [need help with my data] (/Thread-New-User-need-help-with-my-data)
RE: New User [need help with my data] - Walla Walla - 09-11-2017
Wish I could tell you. A very Evil thought about the fate of your Doctors health came to mind though.
RE: New User [need help with my data] - Sleeprider - 09-11-2017
Mum is using a machine designed to treat obstructive sleep apnea. I'm a little baffled that a doctor that diagnosed central and mixed apnea would consider this a successful trial. If you contact him, I would simply ask, how long do we need to fail to persuade you to go with what your knowledge and expertise should tell you is right?
RE: New User [need help with my data] - Gideon - 09-11-2017
the 4th image looks pretty good, close enough for success right. I night out of 30 means success, right . . . . . . . .
Set Sarcastic mode off.
RE: New User [need help with my data] - DeepBreathing - 09-11-2017
The results are consistently bad. I don't see any improvement happening unless you make some fundamental changes to the therapy. Waiting a month isn't going to change that.
SleepRider said it best...
RE: New User [need help with my data] - Recurve - 09-12-2017
Thanks All, I will contact them tomorrow to see if her heart results are known yet and if so how do we proceed as the current way is clearly not working. 1 day the 7th Sept I think I counted 60+ Central Apnea in a little over an hr.
I may also look into seeing another sleep clinic as I have lost all faith in the current doctors she is seeing.
He did mention they may like to do another sleep study in the hospital where they can change settings to see how she best responds, is this worthwhile or are we much better (if her heart is fine) to just move directly to the ASV.
We are considering changing the setting back to max pressure of 11 as before he changed that back up to 12 her results seemed far better apart from 1 night. Can a change of 11-12 pressure cause such huge changes or is this just part of what you all described as no consistency with current machine.
RE: New User [need help with my data] - Sleeprider - 09-12-2017
Most doctors believe they need the clinical study in order to decide how to prescribe settings. That is especially valid in mixed apnea where an EPAP that controls OA must be determined along with a pressure support range that can control CA and Hypopnea. As long as you have a clear understanding of the purpose and protocol of the test, then it is a prudent and normal approach.
Today's automatic ASV machines can generally be used to find effective therapy settings by people with some knowledge of the process, and on the forum, we often help members fine-tune ASV. A good resource is the Resmed Titration Protocol, which is a simple document an procedure to understand.
https://www.resmed.com/us/dam/documents/products/titration/s9-vpap-tx/user-guide/1013904r3_s9-vpap-tx-sleep-lab-titration_user-guide_glo_eng.pdf
https://www.resmed.com/us/en/commercial-partner/products/devices/aircurve-10-asv.html
http://www.apneaboard.com/CSA-and-ASV-Updated-Morgan.pdf
In most cased titration is recommended, and would be required unless you are self-financing and treating. Understand the basics of the process and ask questions to verify your professionals are following procedures that will achieve your goals for treatment.
RE: New User [need help with my data] - Recurve - 09-26-2017
Hi, We contacted them to find out the results of the heart test and where told she would be fine for ASV her result was 70% and I think min is 45% for ASV
I was thinking great at her next appointment they would arrange for a sleep test where they would test her on that machine.
They asked me to not touch any settings in the meantime as they wanted an overall picture and that continued use of her machine the centrals would likely come down. I was specifically told under no circumstances was I to contact them about setting adjustments.
I tried to do as they asked but eventually I had enough of the crap results with zero consistency after he changed her max pressure up to 12 it has got worse and worse. The technician said she would contact the doctor about lowering the pressure back down to 11 where she had the most success (if u can call it success).
Today we just got a call to state the doctor will not adjust the settings, they are happy with these results until she thinks he will book her into a sleep test to test which CPAP range works best for her. No mention of ASV testing at all.
I will show last 7 days results now
https://imgur.com/a/Zl7eG
https://imgur.com/x8Rcr7n
https://imgur.com/WTWQNKZ
https://imgur.com/NJGKutU
https://imgur.com/4zk7jbG
https://imgur.com/B6w4coo
https://imgur.com/WFC8iGs
The technician told my mother today the best she thinks they can hope for is an AHI of 15 and she should be happy considering where she came from being her sleep test was AHI 80+. The clusters she says is just different stages of sleep and overall even though a few days she had 90+ Centrals in an hr that is fine they look at over the whole night not at cluster events.
Her next appointment to see the sleep doctor is on the 10th October would people here stick with these setting until then? Would you demand trial of ASV? How do I convince my mother to do the changes suggested here. She is worried about getting the doctors offside and offending them and they won't help anymore. IMO they are not helping much anyway so what do we have to lose.
I have booked an appointment to see her GP and will be printing off these results for him to see. I am thinking we may need to find another sleep clinic if they are happy with these results.
Thanks
RE: New User [need help with my data] - Walla Walla - 09-27-2017
If you have the option I'd change Doctors.
RE: New User [need help with my data] - Sleeprider - 09-27-2017
I think it is clearly time to obtain a referral to a different doctor and clinic. Her primary care may be able to suggest someone competent in treating central and complex apnea. I'm not sure if you have the printed reports from her sleep study and titration study, but do get it. You are entitled to copies of those reports, the prescription(s) and recommendations to date under HIPAA.
You should make one last attempt to speak with a physician associated with her care, and confront him/her on why a full sleep titration study on a bilevel with backup rate has not been considered. She needs ASV. You should make clear your intent to seek competent care elsewhere if you can't get it here. I would like to hear from one of the other Australian members familiar with the acquisition of ASV there. @Deepbreathing is apparently on "walkabout".
I'll just add, that there is no way they are going to get an optimized AHI of 15 given her current event rate at over 40.
RE: New User [need help with my data] - Recurve - 10-03-2017
Need help
So we went to another sleep place to get a 2nd opinion he asked us to bring in the SD card so he could look at results
I took laptop in with me with detailed graphs downloaded he used our laptop to view detailed graphs once again I do not think they knew how to download them to see as he just looked at overall summary graphs.
He told us he wants her settings changed and did so back to auto 6-15 pressure as he said that's where she had best results. I asked about ASV and yet again they do not think it necessary. He advised another sleep study be done which I agreed with as long as it can test ASV. Her heart result test was 70% so should be no issue that it dangerous.
Here comes the worst part I get home and go to download her last nights data to view thru sleepyhead and it wiped all previous data I had it write protected (locked) but all data is now lost and it can not even download last nights results correctly.
Rescan also has lost all detailed graphs from September 12th until now and again last nights will not show detailed graphs.
I then looked at the SD card and every file date modified says today's date and he changed the cards assigned drive to "resmed"
I have backed up data on another machine except last nights. What do you think he has done and is it safe to use this card tonight?
I was already at a loss as to why they do not see an issue needing ASV and now find he erased data. If I was to download any data to my backed up machine it will erase previous detailed graphs on both sleepyhead and resmed software. Should I go and buy a new SD card would this erase old data also?
Any help appreciated