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Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
#11
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
If they will issue a bilevel machine, we can configure it as CPAP or bilevel. I think the important thing is to try to stabilize your condition and develop some therapy history that will move things forward. Changing hospitals sounds like a great idea. In the U.S. we have laws that specifically give us the right to our records. It seems very condescending to say, you won't understand the test results. It's not that complicated.
Sleeprider
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#12
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
(01-09-2021, 01:20 PM)Sleeprider Wrote: If they will issue a bilevel machine, we can configure it as CPAP or bilevel. I think the important thing is to try to stabilize your condition and develop some therapy history that will move things forward.  Changing hospitals sounds like a great idea.  In the U.S. we have laws that specifically give us the right to our records.  It seems very condescending to say, you won't understand the test results.  It's not that complicated.

Yea the new doctor was a dick. He was very dismissive to me and told me that "I am a specialist, your previous hospital was just a district one". Funny I asked him.about UARS and he said "that's just borderline sleep apena". 

I need to look into the laws regarding this..I should know as I have a law degree, haha, but I don't know. I told the secretary on the phone that I want my sleep report, and she did seem VERY confused and bemused as to why I wanted the sleep study results. As if it wasn't a thing that most sleep apnea patients request.
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#13
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
I sympathize. I am much older than you (83). When my sleep apnea first needed CPAP treatment about 11 years ago it was obstructive, and CPAP served me well. A few years ago I went to APAP. About that time I started developing central apneas. They are inconsistent and wax and wane over days or months. My current pulmonary practice has not dealt with it. My Auto-PAP began malfunctioning last summer and I tried my old CPAP, which proved much better. I had a sleep study again last autumn. I requested ASV and hoped they would titrate me for that. The pulmonologist prescribed BiPAP. I questioned that but agreed to try it. (All this was by phone consultation except for the sleep study at a sleep lab - due to the pandemic) The BiPAP tripled my AHI including Central Apneas. After three days I notified the practice. They put me off until a February appointment. Two days later in a regular consultation with my primary care practitioner I told her my story. She said that particular pulmonary practice had failed others lately, refusing to see them in person. She told me to stop using the BiPAP and go back to my old CPAP. I returned the BiPAP to the equipment supplier. In the US, under Medicare, machines can be tried and returned within 30 days. My primary care practitioner has referred me to another sleep specialist. I have an appointment in a few days. This first appointment will be by phone. I mailed ahead printouts of data from OSCAR and a history of my sleep apnea and treatments. I hope I can begin to convince this new practice I need ASV. I am willing to pay for it if I cannot get it under insurance. Two sleep therapists at the supplier of equipment agreed that only ASV will treat my unusual pattern of apneas. So I encourage you to keep pushing for ASV.
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#14
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
Clgrover, just an FYI. I saw a lightly used Resmed Aircurve 10 ASV for sale at $225 in Sharon Mass in the Craigslist. It's been there for a few days. This is just southwest of Boston. You might want to look.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#15
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
So what if you can't interpret the report? You asked for it. Maybe you'd like to frame it. Sounds a lot like some fake doc I've talked with. I'm mentioning past sleep study data and he interrupted me stating I'm not trained to read data. OK how hard is it to interpret CA 124 and OA 24? Then he says if I'm looking at a pulse oximeter it makes oxygen levels drop! Quack goes the duck.
Dave

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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#16
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
Sleeprider, thanks for the lead. I appreciate that very much. I have contemplated buying an ASV on my own, but decided to be compliant with the system until the appointment next week, to see if I can continue under medical supervision before I take it all into my own hands. Fortunately I had a bit of remission of the CAs over the past couple of weeks and have been feeling better. But last night the CAs (almost 8 per hour) and a great deal of Periodic Breathing (almost 46%) returned. As I have seen elsewhere on ApneaBoard the only thing consistent about CAs is inconsistency. Trying to establish need for ASV is a roll of the dice. I may or may not have a lot of CAs on given night, even though they are, for me, almost always way over 50% of all apneas. My pattern seems extremely unusual from all I have been able to find out, especially with my having no history of stroke or heart failure.

Again thanks for the lead. In another week I may start searching for an ASV on my own.
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#17
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
Hi,


I am in the UK and as Sleeprider said, I have a self purchased ASV older S9 tech purchased myself. I take it from my reading all you have had is an at home sleep study at the moment. Under GDPR and also health regulations you are entitled to have copies of all records on file from the sleep specialist where you had the overnight study. To get this information I suggest you contact either the consultants secretary or the clinic where your test was carried out, but this won’t help you get an ASV but will give use a chance to review the at home sleep study.

The first consultant should have sent you by mail a summary letter diagnosis and possibly a prescription. But as you were diagnosed with Central Sleep Apnoea the first consultant is perfectly within his rights to refer you to another consultant. The problem comes now due to COVID non urgent hospital admissions are being suspended so no in hospital sleep studies are availiable, my annual review meetings are remote over the telephone. It took me nearly a year even to get a diagnosis of central sleep apnoea 1 at home study and two in hospital studies I went and sorted my own machine to treat my central sleep apnoea.


I am self treating and it is possible to buy a used Resmed VPAP adapt from dotmed I can’t share links due to rules associated with this site.


I suggest you get a copy of your at home sleep study you can buy masks and hoses online or direct from Resmed but you won’t be able to buy an ASV from Resmed or many other suppliers without a prescription, try and source yourself a Resmed ASV.
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#18
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
You could also look at buying your own Autoset or VAuto BiLevel from Supplier #2 I don’t think they require prescriptions from the UK for these machines worth contacting them but they would require a prescription for an ASV
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#19
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
Since posting a while back I have had a consultation with another practice. I was listened to. My OSCAR printouts were reviewed. I was set up for a sleep study which was a titration for ASV. The ASV was prescribed. I don't completely understand it but in terms of insurance (US Medicare for me) the study did not establish the need for ASV satisfactorily but I was able to buy one myself and the prescriber faxed my prescription to the vendor and I received the machine a few days ago. I found a very good price for an ASV. I had emphasized all along to the previous and new provider that I was prepared to pay for an ASV if I could not satisfy insurance requirements. With this new machine I am now getting a fraction of 1% AHI. Success at last! If you have central or complex sleep apnea it pays to keep pushing. I feel I am gradually climbing out of sleep deficit and not continuing with sleep deprivation. It has been a long slog since my central apneas appeared. I am glad my complex sleep apnea has finally been recognized and is being treated. I am also glad I am able to afford to pay for the ASV machine. So, to any who have untreated central or complex sleep apnea, I encourage you to press on whatever way you can.
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#20
RE: Diagnosed with Central Apnea, but doc refusing treatment. Need help (UK)
cigrover, thanks for following up. I'm glad you are finally getting the therapy you need. Glad the doctor came around and was open-minded to the real diagnosis. Typical Medicare being the bureaucracy it was created to be, still standing in the middle between doctors, patients and effective therapies.

If you can get a copy of your titration study and post it with personal information redacted, we might be able to see things that will support insurance in the future. In most cases, I think Medicare is in the habit of denying ASV and on appeal it may pay.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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