I had another appointment with my sleep specialist this week, so I wrote him a one-page summary of all the conventional treatments I’ve been exploring in the hope of curing my obstructive sleep apnea.
Here are the main points:
- Used Mandibular Advancement Device (MAD) every night 11/4/2019 to 8/1/2020. Improved headaches but still very fatigued.
- MAD use has shifted my lower jaw forward so I can’t engage my molars. Needs addressing.
- 4 Months of Oropharyngeal exercises 12/8/19 – 13/12/19 didn’t improve daytime sleepiness.
- Started CPAP with Resmed AirSense 10 AutoSet & AirFit P30i Nasal Pillow Mask on 12/12/2019.
- Used CPAP with MAD until 8/1/2020 and without since then. It seems tolerable for the short term.
- Researching palate expansion appliances and other techniques to permanently improve my airway.
I have also been consulting these specialists on potential dental, orthodontic or surgical cures for obstructive sleep apnea:
5/12/2019: Dr Dave Singh (Orthodontist, President of Vivos & inventor of DNA expansion appliance)
Attended presentation to recruit dentists to offer DNA/mRNA expansion appliance, reported to cure even severe sleep apnea. Currently no Australian providers. Met several dentists and ENT’s knowledgeable in sleep apnea, one of whom suggested consulting with Dr Greg Lvoff (ENT). Invited Dr Michelle Ever Juan (dentist) who fitted my SomnoMed MAD. She attended but I haven’t heard back from her yet whether she will do the training and become a provider. Not likely to be available in Australia for a few months at least.
9/12/2019: Dr Derek Mahony (Orthodontist, Full Face Orthodontics)
Explored orthodontic treatment options. Said I had narrow jaws and insufficient tongue space, possibly caused by extraction orthodontic work when I was 13-15. Suggested I need DOME palate expansion, Damon Braces and MMA surgery, and CPAP in the meantime. Referred me to Dr Greg Lvoff (ENT) for MMA evaluation and Chris Kelly (Sleep Scientist/Dental Prosthetist) for a custom moulded CPAP mask.
16/12/2019: Chris Kelly (Sleep Scientist/Dental Prosthetist, AER Healthcare)
Adjusted my SomnoMed MAD to allow more tongue space. Fitted me with a custom device intended to train my tongue to rest on the roof of my mouth. I haven’t pursued one of his custom moulded CPAP masks as the Resmed Airfit P30i seems to be working OK for me.
20/12/2019: Dr Larry Kalish (ENT, Nose Specialist at Sydney Sinus and Allergy Centre)
Explored whether nasal obstruction is an issue. Used endoscopy and said I had enlarged turbinates and a deviated septum. Proposed Septoplasty + Bilateral Inferior Turbinoplasty surgery. Didn’t believe that palate expansion would improve my nasal airway, but research suggests otherwise. I want a second opinion from Dr Greg Lvoff, who may be able to combine nasal surgery with MMA, before proceeding.
13/1/2020: Dr Nader Malik (Dentist, National Dental Care)
Explored dental options. Took a CBCT scan which showed a very narrow airway behind my tongue. Said this was likely caused by my prior orthodontic treatment which was the usual standard of care at the time. Suggested the best dental option is a fixed CD Appliance to expand my maxilla forwards, followed by braces. I’m also considering implants to replace the missing teeth. However, he believes that jaw surgery with orthodontics will give me the best outcome as recommended by Dr Mahoney.
17/1/2020: Dr Theodore Belfor (Orthodontist at Facial Development, Inventor of Homeoblock expansion appliance)
Sent him my CBCT scans and had a consultation online via Zoom. My airway is collapsed behind my tongue to only 3mm deep. Nasal surgery won’t cure me because the obstruction is in my throat. He could improve things for me with Uniblock and Myofunctional therapy but said he can’t cure severe sleep apnea. Homeoblock could improve airway if I could find an Australian dentist willing to update their training and fit it. Has met and trained Dr Derek Mahony. Also suggested I need MMA to really cure my sleep apnea.
12/2/2020: Dr Greg Lvoff (ENT at Sydney Adult and Children’s Ear Nose and Throat Centre)
First available appointment booked to evaluate whether I would be suitable for MMA or other surgery. Hasn’t happened yet.
Conclusion
My sleep specialist recommended I slow down and wait to see the effect of CPAP on my daytime fatigue before proceeding with surgery. I was under the impression that MMA surgery was only available to people who had failed at CPAP, but he said I could have surgery if I wanted but should only do it if CPAP is successful. He said that in his experience CPAP is very effective so if it doesn’t eliminate my symptoms there must be something else going on.
He has no experience with palate expansion or MMA surgery to treat sleep apnea, said my case was too complex for him to manage and recommended I see a multidisciplinary team at The Woolcock Clinic.
I’ll take his advice and wait a while to see what effect CPAP has on my daytime symptoms. I’ll also get Dr Lvoff’s input on whether MMA is an option for me, but wait before diving in to allow my health and fitness to recover for a while first. I wouldn’t mind having at least a few months of feeling like a functional human being again before considering getting my face carved up.
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17 Comments
Max Chepas · January 8, 2021 at 8:33 AM
Hi Graham,
Have you resolved the issue and found a specialist in Australia that will expand palate?
Max
Graham Stoney · January 8, 2021 at 9:45 AM
I found three in Sydney: Dr Derek Mahony from Full Face Orthodontics, Dr Jalal Khan from The Dental Station and Dr Mark Levi at The Smile Shop. I went with Dr Khan because I wanted the DNA Appliance and I met him at a presentation Dr Singh gave in Sydney in November 2019. I also know of other DNA Appliance providers in Perth and Melbourne. Cheers, Graham
Johnathan · January 29, 2021 at 3:47 PM
Hey Graham,
Roughly how much did all these consultations cost? Did they give you an indication of how much it would be to expand your palette?
Graham Stoney · January 29, 2021 at 4:06 PM
I never added it up but it was probably about A$1200 for the ones described here, plus hundreds more for the sleep specialist since I started seeing him. I ended up getting with a Vivos mRNA Appliance which cost me about A$9k.
Adam · November 16, 2020 at 10:29 PM
Hi mate,
If you haven’t already read it, it might be worth checking out the book Breath by James Nestor.
Cheers and good luck
Graham · November 16, 2020 at 10:37 PM
Hi Adam. Thanks mate, it’s on my reading list! Cheers, Graham
Joe · May 21, 2020 at 10:28 PM
Hi Graham,
Thank you so much for the effort you put into sharing your journey. I’m on a very similar path having had CFS for over a decade, also having done a lot of emotional work and recovered my health to the point where I can study full time at Uni (just!). I’m also now (re)exploring Sleep Apnea and Limbic Retraining/Somatic Experiencing as the next steps forward.
Anyhoo, just wanted to leave this little recovery story here in case you hadn’t come across it already. It’s from a guy who overcame his CFS after persistently going down the Apnea/Airways rabbit hole for a few years. I found it well written and it gave me new ideas to explore.
All the best 😀
https://www.insights4print.ceo/my-4-year-long-fatigue-issue-and-how-i-recoverred/
Graham · May 29, 2020 at 3:09 AM
Hi Joe,
I’m currently studying at University myself and with the help of a few disability-based extensions and no need to travel due to COVID, I’m managing it OK. Still hoping the CPAP will improve things more when my sleep improves, which has been disrupted due to grief over my father dying 3 months ago. His death brought up some unresolved childhood trauma for me, and University is bringing up some other childhood stuff too. I’m studying music and get intense performance anxiety. So there’s more work to do on my limbic system too. The complication is that sleep apnea stops us getting into the deep state of sleep where our brains consolidate emotional memory. That’s probably why all the therapy I’ve had before being diagnosed took so goddam long to get to the root of my childhood emotional abandonment terror. It’s a process.
I’ve tried a heap of breathing exercises including Sudarshan Kria, Wim Hof and Oxygen Advantage, and none of which had any effect for me. A friend of mine has done the Oxygen Advantage training and claims to be able to help people with sleep apnea, but she couldn’t help me. I think it all depends on the location of the obstruction. I’m glad the guy recovered, but I’m also jealous!
Thanks for dropping by, and let me know how you go with the Limbic Retraining/Somatic Experiencing.
Cheers,
Graham
Joe · May 30, 2020 at 7:32 PM
Sorry to hear about your Dad. Hope you’re going ok with the grief.
I’m a musician as well, I’d love to study formally one day. Best of luck with your next performance.
To be honest drawing connections between my CFS and sleep study results (from over a decade ago that I didn’t really consider all that much amidst a huge battery of other tests) has been blowing my mind lately. Thanks for inspiring me look in this direction.
I’ve been using breathe right strips this last week and have got some nice little boosts in mental clarity each day, I’m gonna experiment with mouth taping next week. I’m also toying with the idea of getting a Dreem 2 headband to start properly tracking which approaches are actually benefitting my sleep each night. Once I finish this book I’m working on I’m gonna go do the ENT thang as well. I’m a little intimated by the whole concept of MMA surgery though..
I wonder if a dysregulated ANS can cause/worsen sleep apnea somehow? Or if there is some connection between the two? My current hypothesis is that my condition is a combo of OSA, SIBO and a dysregulated ANS. I’m just not sure which is at the base of it all and where to treat first, but I’m sure it’ll get clearer as think it through some more.
All the best from a windy Melbourne.
Dave Conte · January 25, 2020 at 4:53 AM
Graham,
I have severe ME/CFS, bedridden for almost 3 years and ill for 5. Onset of symptoms was in March of 2015, precipitated by an upper respiratory infection and then two weeks of severe mental stress. I also have a sleep apnea profile very similar to yours, diagnosed in 2016. Arousals were 47/hr and my RDI 29. I have mostly UARS (upper airway resistance syndrome) — my results indicated “sleep apnea characterized mostly by increased upper airway resistance.” I’ve been using CPAP religiously for about 4 years.
In addition, I had what’s called a sleep endoscopy, which showed collapse of the airway at the tongue, soft palate, and epiglottis. And I also had, get this, a temporary TRACHEOTOMY (still have it in) done a year and a half ago, because an ENT convinced me that I should rule out sleep apnea as the sole cause of my fatigue. I slept with the trach open the first three nights and the results were horrendous: racing heart, numb legs, tight chest, severe exhaustion, etc. I now cap the trach off and just use CPAP on its own, just like I was doing before. The doctor said there must be something else going on besides the airway issue. Which leads me back to ME/CFS.
I’ve tried 25 different medications, to no avail. And I have The Gupta Program sitting on my bookshelf downstairs, having done some of it, with no positive changes.
-Dave
Graham · January 25, 2020 at 12:09 PM
Hi Dave,
Wow, that’s really got to suck. You must be incredibly frustrated after going to such great lengths to get your sleep apnea treated. Have you had any orthodontic treatment in the past, or been checked by a dentist or orthodontist trained in sleep medicine to assess why your airway is compromised? I’m also curious about the nature of the severe mental stress that occurred just before you got ill?
Cheers,
Graham
Dave · January 25, 2020 at 11:48 PM
Yes, the assessment was that my airway is narrowed due to my anatomy and having had my molars extracted when I was young. Like you, I tried a custom-fitted oral appliance (MAD), but it was only partially effective, according to my sleep study; I felt no better while using it.
My sleep doc says my apnea is effectively treated with CPAP. The trach not working is telling. Perhaps it is neurological and I do have CFS. The extreme fatigue and CFS symptoms remain despite my apnea being treated. CFS and sleep apnea are not mutually exclusive. But I always come back to the idea that “my sleep apnea is the cause of my fatigue.” However, the doc says it’s treated and I likely have limbic system dysfunction.
The mental stressor was work-related. I was doing a complicated project that really taxed my brain and caused me to become angry, emotional, and frustrated.
Do you have a plan if your surgery isn’t the solution and symptoms remain?
Graham · January 26, 2020 at 7:28 AM
Well, I’ve realised that sleep apnea can throw everything out of whack since your body stops repairing itself adequately each night. As to whether my body will fix itself just by getting deep sleep again remains to be seen. At the same time, I was conditioned to suppress all emotion by my narcissistic mother who would go into a rage whenever I was upset at her, and I’ve been working on freely expressing myself most of my adult life. I’ve had a couple of breakthroughs lately, and am open to the idea that suppressing emotions like anger could lead to dysfunction deeper in the nervous system. I’ve been using breathwork to explore this, and I’ll write about that down the track.
My plan at the moment is to wait another couple of months to see the impact of CPAP on my daytime symptoms, while also consulting an ENT about whether MMA surgery is an option for me down the track. If my daytime symptoms don’t improve, I’m off to see a doctor who specialises in CFS and see what they can do for me. My sleep specialist convinced me not to proceed with surgery until my daytime symptoms have resolved because in his mind, CPAP is pretty much 100% effective at treating sleep apnea and if that doesn’t fix my fatigue, surgery isn’t likely to either. I’m well enough to have enrolled as a full-time uni student this year, so I do seem to be recovering over time… but it’s glacially slow.
Danny · January 25, 2020 at 2:00 PM
Virus and/or stress seems to be the most common catalysts that always precede the onset of CFS, I think improving your apnea is just one small piece of a large puzzle…
I know I’ve mentioned this device before but please look into the Frolov breathing Device, using it will retrain how you breath 24/7, has been used extensively in the former soviet Union to treat an array of health conditions..
https://www.normalbreathing.org/frolov-device/
Can read more here, they are very cheap to purchase..
Graham · January 26, 2020 at 7:18 AM
Thanks for the suggestion. Dr Belfor suggested I practise breathing with a Relaxator for an hour a day, so I’ve ordered one and will give it a go. It is a large puzzle indeed. Cheers, Graham
Danny · January 26, 2020 at 3:02 PM
I also use the relaxator and its amazing, you will definitely feel an increase in energy and improvement in sleep, I noticed big improvement when I got to level 4 – 4.5 on the relaxator… These devices are amazing and underutilised in my opinion..
Sandy · January 22, 2020 at 7:26 PM
Good luck. Must feel good to have the glimmer of a concrete answer. Fingers crossed you feel much better very soon ??