Note: This post may contain statements that I no longer consider true.
See: The Vivos mRNA Appliance Didn't Improve My Obstructive Sleep Apnea.
It’s been just over 2 months since I started wearing my Vivos mRNA Appliance, so here is an update. I have expanded the upper appliance a total of 2.25mm. Subjectively I’d say I am sleeping better as I’ve had pretty vivid dreams this week, which is good because our body does most of the repair work during REM sleep. I feel a little more alert during the day, but I still need afternoon rests. Perhaps my nasal breathing is improved but I could be fooling myself on that.
My average use of the appliance so far is very close to 16 hours/day, composed of roughly hourly cycles during daytime, and leaving the device installed in the evening and over night. I track my usage in a spreadsheet which helps tremendously with my compliance and generates pretty graphs showing my daily usage so far, like this:
My Daily mRNA Appliance Usage over the first 2 months
I had some trouble with the lower appliance impinging on my lower jaw, which was painful and became quite inflamed for about a week despite getting the appliance adjusted to remove the offending acrylic. This meant I only wore the upper appliance for a week and when I went to reinstall the lower, it didn’t fit so I wound it back 2 turns in order to be able to insert it; so my lower appliance is now 2 turns behind the upper in terms of expansion.
I wear the appliance with my CPAP machine set on fully automatic, and I was hoping to use the pressure trends from the machine to tell me when I can stop using CPAP. However, this month’s pressure trend graph isn’t too encouraging as the pressure required is still gradually increasing:
Second Month CPAP Pressure Trends
If the line doesn’t start trending downwards I’ll need another sleep study to know when the CPAP machine is no longer necessary, but that probably won’t be until at least the 6 month mark when I was planning another sleep study anyway.
The other big development is that I’ve received my Bow face mask, which I now wear with the appliance (and CPAP machine, remember) every night, and as often as practical during the day. Here’s a picture of it:
The Bow comes in a very pretty box
It took a couple of nights to get used to sleeping with everything on my face. I tape my mouth so that the CPAP pressure doesn’t blow my lips apart, but found that the elastics make it impossible to get a seal in the corners of my mouth; especially since I have the facemask set to pull up at around 15-30 degrees. When I lie on my side, drool soaks out into the tape and runs down my face, waking me up. I solved this by putting Polident denture adhesive into the corners of my mouth so that my lips are saliva-tight around the elastics. It’s pretty gross removing the goup in the morning, but it works.
In theory The Bow allows a lot of flexibility of head movement, but in practice the plastic headpiece slides down the metal cannula much more easily than it slides up, which left me constantly straining my neck to pull it back up again. To get it to stay in place I tie an elastic band, which you can see in the photo, around the metal shaft which stops the plastic shaft falling down. An unexpected benefit of this is that when I’m in bed, I can lock the shaft in a position that holds my head up with my chin away from my chest and helps keep my airway open wider than it would otherwise be. This only works because The Bow anchors on the chest rather than the chin, and I’m hoping it will help liberate me from my CPAP machine earlier than would otherwise be possible.
The other issue with my Bow is that the headpiece is slightly too tight for my forehead. It comes in two sizes and I ordered the L, which I assume stands for Large, but it’s not quite large enough. I’ve been trying to expand it by clipping it to a large pot with bulldog clips when it’s not on my head, and I think this has improved things somewhat but the plastic is rather stiffly elastic. I wish they made an XL version for guys with wide foreheads like me: It’s not exactly comfortable wearing The Bow, and this isn’t helping. However I find I can use the computer, read a book, or watch TV with it on. In fact, I’m wearing it right now while writing this post. I also managed to watch Perfect Strangers subtitled in Italian on SBS World Movies last night without anywhere near as much drama as the characters in the movie.
The other other issue is that after only a couple of week’s wear, the velcro rectangles that secure the strap around my chest that keeps The Bow in place are wearing out and need replacing. I went to a haberdashery store today and got some 20mm elastic tape that I’ve replaced the chest strap with, which should be a lot more durable. I put The Bow on and off multiple times a day with my appliance, so I needed a better solution given that I expect to be wearing it every day for the next couple of years.
I also do daily singing practise to tone the muscles in my throat and improve my pitch, and I recently started live streaming my morning singing practice sessions on Twitch to help overcome my self-consciousness about singing in front of other people. So please come watch me sing one day and make sure you say “hi” in the chat box.
30 Comments
Penelope · May 9, 2021 at 1:48 PM
Where did you get the angle to set the face mask?? I think I’ve only come across people wearing it so that it pulls at a downward angle . By the way did your mandible grow at a downward angle or is it straight ? I’ve gotten used to the X-rays of the mma people and they usually have a steep downward angle of the mandible
Graham Stoney · May 9, 2021 at 5:47 PM
I don’t recall where I read about this, but I aim to pull upwards with the facemask by 15-30 degrees to mimic the counter-clockwise rotation that people typically seek when having MMA surgery so that the mandible sits further forward to relieve the airway obstruction behind my tongue. That isn’t easy during sleep because the elastics create a gap that leaks air and saliva, so during sleep I reduce the angle or just pull forwards. I doubt the exact angle matters much, but pulling down isn’t likely to be as effective at untrapping a mandible, so I never do that.
I don’t believe that my mandible grew downwards; it just didn’t grow forwards enough because my diet was too soft and braces made everything worse during my adolescent growth spurt. I don’t know enough about the anatomical markers to interpret X-rays and CBCT scans with regards to airway.
Cheers,
Graham
penelope · May 22, 2021 at 12:07 PM
could you tell us how you do the rubber bands? the bow company says to tie the 2 rubber bands they send to make it longer. is that what you’re doing ?
Graham Stoney · May 23, 2021 at 8:33 AM
That’s what I did initially, but I had trouble sleeping with The Bow because saliva and air would leak out around the elastics. I soled that problem by sealing around them with Polident denture adhesive, but that caused the rubber bands supplied with The Bow to dissolve/break. Now I just find the tightest elastic bands I can tolerate and use them instead. I’m currently using ones I get tying bundles of asparagus from the supermarket!
Penelope · May 24, 2021 at 12:26 AM
So the asparagus rubber bands don’t break ??
Graham Stoney · May 24, 2021 at 7:14 AM
They do eventually, but not as often. I don’t think the type of elastics is critical; just find the strongest tension you find bearable. If you really want to use orthodontic elastics, they’re available on eBay.
Jenna · January 18, 2021 at 2:22 PM
Graham, thank you for sharing your story and the journey you have been going through! im really interested in DNA appliance with headgear. and I was wondering if the headgear works..do you see your face moving forward? and the health of your gum and born..im afraid the appliance push my teeth out of the bone…..so scary.. thank you!!
Graham Stoney · January 18, 2021 at 4:27 PM
Hi Jenna. I’m glad you’re finding it helpful; we’re all in this together, as they say. I’ve been using the headgear for about 7 weeks now. I can’t say I notice my face moving forward but the whole process is very gradual. My gums and bone seem fine; keeping an eye of this is what I paid a small fortune to my provider for. I haven’t heard of a DNA appliance pushing anyone’s teeth out of the bone and I don’t think the headgear could cause this because the appliance anchors to pretty much all the teeth, including the molars at the back. DNA is not an aggressive appliance and the risk is minimal because the process is so slow. If you’re interested in headgear, ask your provider to add the hooks for it to your appliance because it’s not a routinely included. You can always choose later not to use it if’s causing problems. So far I haven’t seen any. Cheers, Graham
Lorna · December 31, 2020 at 4:52 AM
I have been wearing a DNA appliance for seven months and I recently noticed that some of my molars (that have the pressure applied to them when wearing the device) appear loose. Have you heard of this happening? I will see my dentist soon to discuss.
Graham Stoney · December 31, 2020 at 7:39 AM
Hi Lorna. No, I haven’t heard of that. I’ll keep an eye out for it. Do you chew mastic gum when your appliance isn’t in place? Cheers, Graham
laure · December 24, 2020 at 9:04 AM
so what’s the verdict on the face mask? i thought you had to wait until the 6th month
Graham Stoney · December 24, 2020 at 9:21 AM
My dentist recommended I don’t use it until I’ve finished with the lower appliance because the lower appliance holds the lower jaw forward during sleep by pulling backwards on the upper appliance; which is working against the facemask. I believe he got this idea from Vivos. However, that logic makes no sense to me: the facemask can only improve this situation by countering the backwards pull of the lower appliance, which is a less-than-ideal compromise resulting from the mandibular advancement function of the mRNA. I want the maximum forward growth possible during this process to give me the best chance of avoiding needing MMA surgery later, so I started wearing it as soon as it arrived which was almost 2 months after I started wearing the appliance. It probably makes sense to wait a couple of weeks to get used to sleeping with the appliance before adding the facemask, but I really don’t understand the logic behind waiting (and in my mind wasting) 6 months.
Lauren · December 24, 2020 at 10:23 PM
So did you tell your provider that that’s what you’re doing ???
Graham Stoney · December 24, 2020 at 10:24 PM
I operate on a need-to-know basis. 😉
lauren · December 25, 2020 at 7:55 AM
did you get confirmation that it’s okay to do this from someone else or are you just goin by your own judgement?? i hope some agga-like catastrophe doesn’t happen from not following directions or do some DNA providers recommend doing it earlier than 6 months.
Graham Stoney · December 25, 2020 at 8:38 AM
It sounds like you’re worried about the implications of starting facemask too early. I asked about this on The Great Work forum, and here on my own blog but got no responses giving a rationale for delaying using the facemask. The timeframe for case S.A. in Chapter 12 of Dr Felix Liao’s book Six Foot Tiger, 3 Foot Cage suggests he started face mask at the start of his treatment, so I sent Dr Liao an email via his website asking if he started his patients using facemask at the beginning of treatment, but unfortunately also got no response. In the absence of any compelling reason to delay it, I used my own judgement and went ahead. One of the reasons I chose a DNA appliance over AGGA is that the progress is extremely slow so any potential catastrophe can hopefully be detected and averted early. I have been seeing my provider roughly every 2 weeks to get the appliance adjusted due to impingement and there haven’t been any signs of catastrophe so far. If you’re aware of anyone who recommends waiting 6 months and what their rationale is, I’d like to hear it. Cheers, Graham
lauren · December 25, 2020 at 8:53 AM
i don’t know the reasons either. i just assumed you got your answer since you seem so confident about taking action. all i know is dna/vivos has been around for 20 years so they probably have plenty of data, research etc to back up the recommendations they make. i hope dr. liao or someone clears it up
Graham Stoney · December 25, 2020 at 8:59 AM
Vivos don’t seem particularly keen on the Facemask, but some providers such as Dr Liao appear to use it routinely. My provider is relatively new and has no experience with it. At the end of the day, I make my own decisions about what to do based on the best information available to me.
Evelyn · December 20, 2020 at 6:32 PM
Hi Graham,
Thank you so much for documenting all your experiences. I also have a vivos mRNA device, and am about 2.5 months into treatment. I only apparently have mild sleep apnoea likely resulting from extraction and retraction orthodontics. This diagnosis explained my brain fog, sleep inertia, the ability to sleep 12 hours and still feel exhausted, and inability to work the night shift as a nurse without massive mood swings. I feel quite a bit better after starting treatment. Many of your experiences are familiar to me, and it’s so helpful to have a source of detailed information about vivos treatment, as there isn’t actually enough available online, it’s hard to separate facts from marketing, and my dentist Dr Jalal Khan in Sydney has not yet finished a case and understandably can’t quite answer every single one of my questions. Hoping to hear more about your progress as you go.
Graham · December 20, 2020 at 7:09 PM
Hi Evelyn,
Thanks for dropping by. I’m glad you’ve found the blog helpful and that you’re feeling quite a bit better now you’ve started treatment. I’m curious how you first heard about Vivos? I feel your pain; it’s frustrating not being able to sleep properly and extraction orthodontists have a lot to answer for. I’m also being treated by Dr Khan and was aware that he’s a relatively new provider so I relied heavily on my own research before deciding to commit. He seems pretty switched-on though and I’m really happy he became a provider so I could get treated. I’m looking forward to being able to say that it all worked out for me as positively as my research suggested. Please keep in touch and let me know how you go!
Cheers,
Graham
Evelyn · December 20, 2020 at 8:03 PM
I also researched various treatment options for over a year on and off before I stumbled upon mention of the DNA device in a forum somewhere. I found Dr. Khan on the Vivos website. I settled on the slowest and least invasive treatment and am treating it as an investment. I’m also really glad he decided to offer vivos. I am quite angry at the whole field of orthodontics generally (I hear you re: going on a rampage). At the moment I’m looking around for what I can expect as treatment progresses – my bite is changing quite a bit, my mandible has come forward and my back teeth don’t occlude so easily now, it feels partially like the teeth have moved, but also my muscles have relaxed and my jaw sits closer to where it’s probably supposed to. My maxilla is slower catching up, and I don’t know if I’ll end up with an underbite/posterior open bite temporarily, or need a face mask – I have hooks on my appliance also. So its good to read about your troubleshooting with the bow mask.
I was unable to tolerate the pharyngeal extension, maybe because my soft palate is much longer than normal, so I had it cut off. I expect without it I may have to do some work to maintain good oral posture/swallow. The appliance does not allow me to easily keep my tongue up against my palate while sleeping, and I do not want to relapse when treatment is finished. The video you linked for oral exercises is helpful and I may do the same as you. I hope the Vivos works to give you some relief, I can’t imagine the struggle. It’s good to hear someone else enjoys singing too – I do love to karaoke and hope to get back to it when it’s a bit less risky to go out
Graham · December 20, 2020 at 8:15 PM
Thanks Evelyn; I hope you get relief too. I tend to channel my orthodontic rage into wearing my appliance and doing my myofunctional therapy exercises. Let’s do karaoke when singing is legal again!
Evelyn · December 20, 2020 at 9:25 PM
Ha ha yes I can see it – orthodontic treatment survivor karaoke/shouting support group
Graham Stoney · December 21, 2020 at 1:13 PM
It’s a thing.
Carolina · December 13, 2020 at 4:46 AM
Hi Graham, thank you so much for your update! I really appreciate your level of detail and analysis.
Wishing that you get some expansion soon and with it some improvements in your quality of life. My son’s quality of life is quite bad at the moment, and I am desperately trying to get an idea of what interventions to help him with, palatal expansion seems to be part of what he needs but it’s quite difficult because he has never tolerated much of anything…
It seems that it’s quite an ordeal to go through MSE, but I still hope that it works for you and that I can use your story as an inspiration for my son.
Funny you should mention the Wellue ring above, since I had actually ordered one and it should be arriving today.
Thank you again and best wishes.
Graham · December 13, 2020 at 7:10 AM
Thanks Carolina. I hope you find a solution for your son. I assume that was a typo as I’m doing DNA, not MSE. Cheers, Graham
Greg · December 10, 2020 at 4:41 AM
Hey I was checking every day for your 2-month update. Thanks so much! So the auto-titration pressure is not improving yet? So it sounds like no discernible change from last month in how you are feeling? Although you have a lot of equipment going on – so lots of variables. I am trying to ascertain Vivos for my apnea before pulling the trigger since it’s such a big commitment. On a scale of 1-10 how would you a) rate the overall results so far, and b) your level of optimism about the effectiveness of the treatment for people in general? Also do you feel the treatment is completely legit or more of not a fully vetted approach? A long while ago I bought one of these…. This could give you a much better way to gauge your apnea trend success… maybe you already know about this…It measures and records all night long events and oxygen level and gives you detailed analysis reports… it gives you kind of like AHI number.. It’s not expensive (I paid somewhere between $45 to $65 dollars a number of years ago), or invasive. This brand seems pretty good (as I have had mine for a while)… maybe others might not be? Hopefully pasted links here go through… ARTICLE: What makes the Contec CMS50D+ so special? – Gadget Victims
https://www.gadgetvictims.com/2019/02/contec-cms50dplus.html Don’t know if Contec updated with a newer version. That I didn’t check.
Graham · December 10, 2020 at 7:33 AM
Hey Greg. I’m feeling thoroughly fed up with the whole thing and want to go on a shooting rampage at an orthodontic convention. It’s really too early to even rate results so far. My level of optimism varies with my morning headache, which today is stronger than I would like. It seems legit, but my OSA was severe on my last sleep study, so the question is whether it will be sufficient for me… and I won’t know that for many months yet. Thanks for the suggestion; I haven’t tried experimenting with pulse oximetry yet but it would be better than relying on stats from the CPAP machine. Another guy I met online swears by the Wellue O2Ring, which appears to be the Rolls Royce of pulse oximeters.
Greg · December 10, 2020 at 9:03 PM
You say severe on latest test… what was your AHI? I will check out info on the ring.
Graham · December 10, 2020 at 9:44 PM
My untreated AHI on my last sleep study was 39.