If you’ve been following my health journey for any length of time, you’ll have noticed that I’ve tried a lot of things to recover my energy and vitality. Being diagnosed with severe obstructive sleep apnea was a major turning point for me, but it was also the start of a new quest to find an effective treatment for the condition that would work for me. There are so many options to consider, and even going with the default recommendation of my sleep specialist to just use CPAP didn’t turn out to be trivial.
I fell through the cracks for being diagnosed with obstructive sleep apnea for years simply because I didn’t fit the typical profile that general practitioners look for since I wasn’t obese. I was tall and thin. GP’s don’t know to look for retrognathia, even though it’s obvious once you see it, and a lot of online resources regarding sleep apnea don’t mention it either.
Dr David E. McCarty from Empowered Sleep Apnea recently reached out to me to hear my story, because he’s on a mission to help people like me who fall through the cracks. He has a background in sleep medicine and understands how bewildering the condition can be once it is diagnosed, so he also wants to empower people with sleep apnea to sort their way through the myriad of treatment options.
After our chat he was kind enough to send me a copy of his most excellent book Empowered Sleep Apnea, which I highly recommend to anyone with the condition who has been newly diagnosed or isn’t happy with their current treatment. The book has a narrative structure and describes treating sleep apnea as an adventure exploring an island. It’s certainly a journey alright.
The book is available in hardcover or E-book at BookBaby, and if you use the coupon code HUZZAH, you can save $25 off the hardback and 20% off the ebook. David and Ellen also have a most excellent podcast on empowered sleep apnea that’s also worth checking out.
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22 Comments
Kim Dahl · February 12, 2023 at 8:26 AM
I just found this blog and find it very interesting since I just completed 2 years of Vivos treatment in the USA (Utah) and believe I got little to no benefit from the process. Like Graham, I have visited several orthodontists who tell me that they don’t believe I have achieved any “bone growth”, but rather just tipped teeth. My upper appliance expanded 8 mm and has continued to have an issue with the screws turning backward for the past several months while I thought it was expanding. The lower appliance only expanded about 4 mm and seemed to always feel tight and cause gum bleeding and discomfort. I do have an implant on the bottom back molar which can’t move, though the the treating dentist said this woudn’t be an issue. My sleep apnea problems continue about the same though with minor improvement due to avoidance of sleeping on my back and myofunctional therapy. I’ve given up on Vivos as it was not a great experience and I could never recommend it to anyone! I’m now trying to deal with my sleep apnea and deciding on an orthodontist to fix my teeth. My Vivos provider had Candid prepare a plan, but it leaves large gaps between teeth at the back and my back tipped molar wouldn’t even contact any of my lower teeth which I find to be unacceptable. I’ll probably just have an orthodontist return my teeth to a good bite. One thing I’m considering exploring for my moderate sleep apnea is iNap which is new, but much less obtrusive than CPAP which I haven’t been able to tolerate. Thanks to Graham for his story and posts. I’m a thin 60 yr old who is very active and athletic, so it is frustrating to deal with sleep apnea. I also have a very narrow and high palate and had 8 teeth extracted as a teenager when I had braces.
Kim Dahl · February 12, 2023 at 8:35 AM
Would love to know if Graham has heard of or considered iNap for obstructive sleep apnea? It sounds like a great alternative to CPAP.
Graham Stoney · February 12, 2023 at 3:33 PM
I hadn’t heard of iNap before you mentioned it. Looks interesting. I’d still like to be able to breathe normally though.
Kim Dahl · February 13, 2023 at 3:21 PM
I agree Graham. I would also love to be able to breathe normally which is why I was so attracted to VIVOS. Unfortunately, I have mixed central and obstructive sleep apnea, particularly when sleeping on my back and both CPAP and BiPAP aren’t options as they made things worse for me when tried 12 years ago. At that time, I tried Auto Servo Ventilation (ASV) for 1 month and it was such a miserable experience that I gave up on it. I’m waiting to get into my sleep doctor to review the results of my recent sleep study and options going forward. iNap is primarily for obstructive sleep apnea, so it may not work for me, but if I have to use something, it appears to be a better alternative than PAP therapy from my perspective due to its many advantages. I’ll comment if I end up trying it and it helps. Thanks again for the sharing of your story. I’ve been unable to find any documented success stories about VIVOS, though supposedly it has helped some people. I”m quite disappointed with my experience. Best wishes!
Dana · July 4, 2023 at 7:15 AM
I really appreciate all the information you have provided throughout your website. Could you please dig in to the iNap?? With your background and insights, it would be lovely to peek under “the tent” and see if it really is a good alternative… THANK YOU!!
Graham Stoney · March 17, 2023 at 2:33 PM
Sorry to hear about your experience with Vivos Kim.
Clark · February 7, 2023 at 10:37 AM
Checking in from sunny San Francisco 10 days post op for EASE nasal expansion
My daytime breathing has improved significantly, no more audible breathing noises, I can now fall asleep in under 20-30 minutes compared to the 30-60+ before, my sleep has noticeably improved but that’s only coming out of the depths of how destructive sleep disordered can be on your physiology and I am still very far from baseline, as a reminder patient profiles are not commutative and what works for me might not work for someone else, since I have UARS (which responds a lot more to nasal expansion because the very problem is nasal obstruction) than proper sleep apnea
If you are indicated for it, I know Lydia Lim uses a KLS martin expander for her DOME (better than the tooth-borne versions like SARPE / conventional DOME)
I will see if I am truly indicated for jaw surgery but given I’m in the ballpark of 10° occlusal plane and 15mm deficient chances are OSA will come for me in old age
Graham Stoney · February 8, 2023 at 9:31 AM
Thanks for checking in Clark. I’m glad to hear your nasal breathing has improved. I had consulted with Lydia Lim and am still weighing up my options for MMA surgery as I want to consult with one more surgeon before moving forwards. How do you know of Lydia?
Clark · February 9, 2023 at 4:57 AM
She drew up a plan in about 5 minutes and called it counterclockwise rotation however the plan was very much linear advancement (not appropriate for my steep occlusal plane) and 8mm at pogonion (if she rotated me even half of what I am indicated for at the minimum I’d be looking at should be 11mm) with premolar extractions (for a 8mm under advancement extractions are wholly unnecessary), her website has more patient info stating she’ll do a more intensive planning in the weeks leading up to surgery date with gadgets like mold casted gel bite impressions but in my experience a world class surgeon would spend at least half an hour on the preliminary plan while drawing up at least two final drafts balanced between conservative and aggressive going into surgery
Very disillusioned with the quality and competence of surgeons in Australia (turbinate reductions are a 15 minute in office procedure in the US) as I have come to appreciate the cutting edge of medicine and quality of healthcare from my time in Silicon Valley, with that being said San Francisco is where the top scientific and technology minds of the world congregate
Budget permitting, I would avoid Lydia or any other surgeon in Australia, I am opting for Dr Walline from LA-COMS as further personal research has shown me I am not indicated for an advancement larger than 16mm, as much as I’d prefer the pre-eminent Dr Kasey Li’s MMA, the final bill without insurance is enough for a down payment on a 2 bedroom in Neutral Bay
Graham Stoney · March 17, 2023 at 2:43 PM
I hear that you were dissatisfied with Dr Lim. I don’t see how any surgeon would have time to do a detailed MMA surgical plan in the initial consultation. After consulting with 6 OMF’s I’m confident that the expertise exists in Sydney to do what I need. I hope your time in the US is productive for you.
Clark · April 12, 2023 at 12:25 PM
I spoke hastily and agree that time-spent-drafting-at-initial-consult is a garbage metric especially since I have the sample size of one
Do consider that I was offered 8mm linear with premolar extractions when instead US surgeons offers me double digits and CCW without extraction
My disillusionment is in the general competence within Australia and the increasingly commercialised nature of sleep medicine, one sleep specialist gaslights me and sells me CBD and the other tries to sell me an pricey sleep hygiene course and neither referred me to see a jaw surgeon
Seeing Narinder Singh tomorrow about a possible turbinate re-hypertrophy, skipped the 13 month queue from a cancellation! Hooah
Graham Stoney · April 12, 2023 at 12:30 PM
Thanks Clark. I agree that sleep medicine is disillusioning and share your frustration. Let me know how the appointment with Dr Singh goes. I have one booked for May after waiting 13 months, but will probably cancel since I doubt he can help me as I’ve already had a septoplasty & turbinate reduction with Dr Larry Kalish, and have been advised not to do soft tissue surgery prior to MMA. I would be interested to hear if he does DISE, and what result you get if you have one with him. Cheers, Graham
Clark · April 13, 2023 at 2:55 PM
Dr Singh does do DISE in fact he can combines it with a surgery to reduce extra procedures, however Dr Kasey Li and Dr Julia Crawford believes DISE is ineffective and lacks merit as it does not sufficiently mimic natural sleep whilst bringing in its own disruptions, so we’re sorta in an Enzo and Lamborghini situation here
As per usual the titan (in his expertise and not in stature as the promo portraits make him look 2 meters tall) notices where others overlooked, he noted my mild lateral wall collapse which is presumably underdeveloped from nasal allergies in the same way mouth breathing leads to smaller jaws, as well the septal swell body that most surgeons don’t operate on as they mainly focus on razing lower turbinates
The conservative treatment he proposed was to coblation wand the lower turbinates and the nasal septal swell body to tidy up the cavity, current literature is unclear on the function of the NSB as well as carrying a risk of septal perforation, I am going to avoid what seems to be an ENS from turbinectomy scenario given the risk/reward matrix just simply isn’t there
The aggressive approach involves cartilage grafts and neither of us is thrilled about that
My goal was to address what I thought was a turbinate re-hypertrophy issue with Dr Singh, and I think Dr Kalish’s rationale was to avoid unnecessary revision operations if MMA fully resolves your symptoms anyway, was there a reason you wanted to see Dr Singh beyond a second opinion?
Graham Stoney · April 16, 2023 at 10:43 AM
Thanks for the update Clark. None of the oral maxillofacial surgeons I visited used DISE as part of their diagnostic procedure, since they can see that my jaws are retrognathic from a CBCT, or just by looking at my face and in my mouth, and they know how to fix that. They said the result of the DISE wouldn’t change their surgery plan so it’s an unnecessary diagnostic procedure. I would have one if I was considering soft tissue surgery to make sure it was targeting the right area, but I’d only do that if MMA didn’t completely cure me, or at least get me off CPAP.
If by ENS you mean empty nose syndrome, I spoke to Dr Kalish about it and he’s only seen two purported cases after all the nasal surgery he’s done, so he’s a skeptic. I don’t think the risk is a factor worth considering if nasal surgery is likely to improve things. So what’s your plan moving forward?
I booked the appointment with Dr Singh in the hope that he might be able to help me before consulting with the orthognathic surgeons knowing he had a 12 month waiting list. Since then I’ve accepted that I need MMA, so I’ll cancel the appointment and keep him in mind if I don’t get the result I want from the MMA surgery.
Cheers, Graham
Clark · April 18, 2023 at 3:24 PM
Empirically ENS is a complication found in 20% of turbinectomies, I’d imagine there wouldn’t be a push to perform turbinoplasty if there wasn’t evidence against a more straight forward procedure could be done in its stead, ENT is known as a high risk profession in China due to the many high profile cases of patient-doctor murders, this doesn’t invalidate Dr Kalish’s perspective since he probably doesn’t do turbinectomies
Interior wall collapse is technically a new problem from all this extra room because I was too constricted to even collapse before, so I suppose the question is if the ~0.8mm I have left to expand is enough despite the flow limitations, editing my CBCT to the post-expansion preview of ~2.25mm actually shows an incredible surplus of space, so I will reassess turbinate reduction after expansion which Dr Singh won’t do cartilage graft unless the conservative treatment doesn’t fully e
Treat the symptoms, not the patient
As for MMA I am booked in at the end of this year at LA-COMS with Dr Walline, I have a good idea the amount of rotation and mandibular advancement needed, most likely seeing Dr Tawfik of Chatswood for orthodontics
Carlos Mota · February 5, 2023 at 5:22 PM
I’m curious if you have tried using “STOPS” on your thoughts about sleep Apnea and also your low energy???
Graham Stoney · February 6, 2023 at 8:20 AM
Good suggestion… it can’t hurt.
Kevin · January 31, 2023 at 2:32 AM
Thanks David, I look forward to hearing about your impression of the book
Matt · January 31, 2023 at 2:20 AM
As you learn how to cultivate energy in the body, the apnea will go away on its own. Learning to relax the nervous system while also creating energy is the way out. Reach out if you’d like perspective form someone who tracked their way out of CFS and sleep apnea.
Graham Stoney · January 31, 2023 at 8:45 AM
Learning to relax the nervous system is not going to address the retrognathia causing my sleep apnea.
Erik · February 6, 2023 at 10:12 AM
Matt, I’m interested to read more about this, any book recommendations…..
Joe · May 16, 2023 at 3:34 PM
Hi Matt, if you’re up for it I’d be interested to hear more from you in regards to recovering from CFS and Apnea using relaxation/brain retraining techniques. Thanks, Joe