The Aussie thread

[Gekko]

I'm curious to know how many Aussies are on this forum. As you all know, an Aussie doctor invented CPAP and ResMed was started in Australia and continues to base a lot of product development and research in Australia. Aussies have a strong connection to CPAP, even though, ironically, the Australian medical establishment and the government still seem to be unsure about CPAP (for example, sleep studies are covered by Medicare, but not CPAP machines or accessories!).

I don't mean to exclude anyone else, but since a lot of the talk in these forums about doctors, suppliers, prices, technology, etc., seems to be focused on the US market, it would be nice to have a separate Aussie thread to share Australian experiences with doctors, hospitals, suppliers, etc.

To start off the thread, I'm a 36 year old male from Sydney, Australia. I was diagnosed a couple of months ago (after waiting 6 months for a sleep study) and have been on CPAP for about 3 weeks. I'm now at the point where I'm starting to get used to treatment and have developed a routine that is working reasonably well, although I feel like I still have a way to go to get everything sorted out.

For those of you who are interested, I am a physicist by training and I work as patent attorney. I also have a law degree but do not practice as a general lawyer, only as a patent attorney. I have worked on sleep apnea devices as part of my work, but it's not the focus of my work, nor do I do any work for ResMed. I have a good understanding of the technology at a technical level. I'm happy to help out and happy to answer any questions to the best of my ability, but I have to make the disclaimer that I am not an "expert" and I probably know no more than most people on this forum

So, over to you...

[dsm]

I joined here in mid 2005

From Sydney. Did 1st sleep study in 1989 at RNHS after returning from some years in NZ. Dr said no sign
of SA back then. By 2000s had GERD (a very good trigger for UARS problems). By 2003 wife was urging
me to get checked again - said I would just stop breathing & when I wasn't breathing it kept her awake.

This new RT predicted no SA - but the diagnosis was AHI=40. Been on the therapy ever since. Am pretty
sure I'll be on it for a long time to come.

Nice ta meecha mate!

DSM

[countman88]

G'day DSM
I am 63 yrs old, plan to retire in two months, live in Brisbane.
Joined the forum 2 yrs ago, usually only read/post threads when I am considering buying new equipment.
First diagnosed about 10 yrs ago, and have used a F&P 221 since then, with Breeze Nasal Pillow mask(s) for most of that time.
I use SNORE for sleep studies, fully bulk billed and convenient for me. Realised last week it is 2 and a half years since last study so have booked in for next week.
Plan on joining all those oldies on their caravan trips soon so I am looking for a small 12v capable machine, perhaps apap, at the moment, hence my reading the forum at this time.
Have considered buying from US a few times, may do it this time.

KenD
Bris

[Gekko]

Looks like we're getting a bit of momentum. I'm sure there's a lot more in the woodwork!

[bigk]

Yep.

Diagnosed November 2007.

Got a Resmed S8II at the exhorbitant prices they charge for it in Australia. Recently upgrated to an S9 sourced in the states so I use the S8 for travelling.

Pretty used to it now. 100% compliant since day one.

[debtheveg]

Hi,

I'm 53 year old female from Canberra. Diagnosed nearly two years ago after decades of insomnia. Tried cpap for two months and felt worse each and every day. Have now had mandibular device for about twelve months, but have had a break from it for a month or so. Starting to use it again as I prefer it to the cpap but still not much fun. Had sleep study with it and went from 23 apneas an hour prior to treatment to 15 with the dental device.

Have registered with the Woolcock Institute as I'm happy to be a guinea pig for any new developments, but am yet to hear back. There has to be a better treatment sooner or later.

Did anyone see something on television a couple of weeks ago, on a new device being developed at a Melbourne university, I think? Not unlike a pacemaker, it's fitted under the skin with wires connected to either the throat or brain, can't remember (I blame sleep apnea brain damage!) and it keeps the throat muscles stimulated and firm.

I, too, was diagnosed with severe oesophogitis a few years ago after being investigated for severe anemia. One thing leads onto the next and I now know it's all related and stems from undiagnosed OSA. If only doctors could look further than the condition they're faced with and investigate WHY someone has the problem and perhaps another condition could be causing the present problem.

Anyway, nice to know other Aussies are out there.

Deborah

[split_city]

I guess I better join the party....

I'm from Adelaide. I recently completed my PhD in which I investigated factors which potentially contribute to OSA, mainly in the overweight/obese male population. I'm currently helping some other PhD students with their studies and also running another study myself.

Good to see some other Aussies onboard

[split_city]

Did anyone see something on television a couple of weeks ago, on a new device being developed at a Melbourne university, I think? Not unlike a pacemaker, it's fitted under the skin with wires connected to either the throat or brain, can't remember (I blame sleep apnea brain damage!) and it keeps the throat muscles stimulated and firm.

Deborah

Hi Deborah. That device has actually been devloped by an American company (Apnex). The Melbourne group is just one of the centres involved in the trial. There are several groups around Australia running trials. The "pacemaker" device sits in a pocket under the skin. A lead from the unit wraps around the hypoglossal nerve (in the neck), which innervates the genioglossus (tongue). The pacemaker stimulates the hypoglossal nerve during inspiration, which moves the tongue away from the back of the throat, aiming to continue to allow airflow. The results have been promising but more data is required.

[JockLitt]

Hmmmm..... Interesting concept the Aussie thread. Glasgow 1971, my brother and I tossed a coin and ended up in Durban - heads would have been Sidney. Been here 39 years now. Seeing as half my former friends and colleagues are now with you, I almost feel at home - except that I'm a Sharks supporter - but we'll say no more about that - at least this year.

Well done guys.

Jock

[Gekko]

Hi Deborah. That device has actually been devloped by an American company (Apnex). The Melbourne group is just one of the centres involved in the trial. There are several groups around Australia running trials. The "pacemaker" device sits in a pocket under the skin. A lead from the unit wraps around the hypoglossal nerve (in the neck), which innervates the genioglossus (tongue). The pacemaker stimulates the hypoglossal nerve during inspiration, which moves the tongue away from the back of the throat, aiming to continue to allow airflow. The results have been promising but more data is required.

Sounds interesting but also invasive! I wouldn't have a problem with being implanted with technology that would save me from a rapid death (i.e. pacemakers, etc.) but I wonder whether this will be a bit too radical for some people. I know I'd probably stick to CPAP rather than an implanted device. Call me a luddite but it just seems like overkill

[Nev]

G'day

I'm in Toowoomba Qld and use a Puritan Bennett GoodKnight 420E with a DeVilbiss 9100D heated humidifer, a SleepZone heated hose and a Resmed Ultra Mirage Full Face Mask. I also use the Puritan Bennett Silverlining 3 software. I got my first machine in April 2004 and had it replaced under (extended) warranty in July 2007 when the little pressure line nipple busted off. I guess my current machine is nearing the end of its useful life and was interested to see info on the new Resmed S9 AutoSet which at last recognises central apnoeas like my old 420E does - and has a "climate controlled" heated hose.

I'm interested in people's experience with the S9 and comparisons with other machines.

Also, I've noted the big difference in price between Aust and the US and wonder if Gekko would like to take it up with the ACCC or whoever to stop what seems to be rorting of Aussie sleep apnoea patients.

I note bigk got a machine from the US and would appreciate PM on the process - freight, customs etc? I've had masks etc sent over but feel a bit hesitant about trying it with a CPAP machine itself. I'd also want to get the Rescan 3.10 software if I went ahead and would appreciate info on where/how to get it.

[split_city]

Hi Deborah. That device has actually been devloped by an American company (Apnex). The Melbourne group is just one of the centres involved in the trial. There are several groups around Australia running trials. The "pacemaker" device sits in a pocket under the skin. A lead from the unit wraps around the hypoglossal nerve (in the neck), which innervates the genioglossus (tongue). The pacemaker stimulates the hypoglossal nerve during inspiration, which moves the tongue away from the back of the throat, aiming to continue to allow airflow. The results have been promising but more data is required.

Sounds interesting but also invasive! I wouldn't have a problem with being implanted with technology that would save me from a rapid death (i.e. pacemakers, etc.) but I wonder whether this will be a bit too radical for some people. I know I'd probably stick to CPAP rather than an implanted device. Call me a luddite but it just seems like overkill

I wouldn't say it's overly invasive and is pretty similar to a pacemaker. The actual stimulating of the tongue must be an interesting sensation for the patient but the level of stimulation is adjusted to each patient's needs. Most get used to it after using it for a short period. At this stage, only patients who cannot tolerate CPAP are being recruited. These are the type of patients who are more likely to want to try anything to treat their OSA.

[scotto]

Hi All,
Well I'm Scott and I currently live in Perth, although I am from Brisbane originally. I went through the Respiratory Sleep Disorders research clinic at Sir Charles Gardiner hospital for my sleep study and cpap trial. I picked up my Resmed S9 Elite and Respironics Easylife mask yesterday (From Perth CPAP).

I am just about to turn 30 (birthday is in 2 days!!) so I think I might be on the younger side for being diagnosed with OSA. My wife is currently working on her Doctorate in Neuropsychology and her thesis topic is on the links between OSA and Dementia, with a lot of her testing being on the improvement in memory and cognitive function in patients after the start of their CPAP therapy. So she had been trying to get me to do a sleep study for a while. My AHI during the study was 58, with my o2 levels getting down as low as 70%. During the 3 week CPAP trial my AHI dropped to 3.5. I will be 100% complient in my treatment, as I know the benefits and my wife will make sure

So yeah that's me, looking forward some good sleep!!

[debtheveg]

No-one else from Canberra?

[MamaJo]

I'm a Sydney-sider.

Diagnosed with OSA last year after a problem with AF.

Have a real love / hate relationship with my machine and mask. Sometimes I might be prone to having a little tantrum and threatening to throw the entire lot across the bedroom. But I never do.

Have been 100% compliant since September 09.