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My story- 20 years of TMJD and MSE at 35

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toomer
Estimable Member
Posted by: @greyham
 
I have underdeveloped jaws and nasal obstruction causing severe sleep apnea, possibly the result of extraction/retraction orthodontic work done when I was 13. I am considering a MARPE and Damon braces to improve my airway but I'm terrified about how much this is going to hurt. I still remember the pain of braces in high school; but life with sleep apnea is horrible so I'm trading off a short period of intense pain against ongoing fatigue, headaches and an early death. Seems like a good trade-off if only I can get through the pain.

I don't know anything about you, but we have similar histories -- I think I had my pre-molars removed for braces around age 11 or 12.  I know that once I got into 9th grade, I had my braces off.  But I have severe OSA, allergies, and I think some TMD issues ... so I just found this forum since I'm considering some maxillary expansion options.

I'm curious to ask why you are leaning more towards something like MARPE ... as opposed to something like a Vivos DNA appliance?  Not trying to push the DNA in any way, but I'm getting a consult on one next week ... so I am collecting as much information as I can.

I think the obvious downside with something like the DNA, is that the process is just going to take longer - maybe 18-24 months.  But it doesn't seem like there's an uncomfortable level of pain involved with it, from any people who had it and discussed their process.  It also seems that it may only be able to affect about 5mm of change, and perhaps some people need more than that.

The upside with the DNA, is that you only have to wear it 12-18 hours a day, and given that the movement is very slow you don't end up with a diastema between the front two incisors until the braces can fix that.

Very curious to get your thoughts.

 

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Posted : 10/01/2020 10:15 am
greyham liked
NoctilucentNikki
Eminent Member

@greyham

Yes, I heard that as well about NSAIDs, however, I only took a few doses. The pain is pretty high- but only for 2 days. Really.

I alternated between the Norco and Ibu for 2-3 days and waited until I had to take them, not just chowing them every 4 hours as I could of. I also supplement with Bone Strength Take Care by New Chapter, and have only seen excellent healing. In fact, the perio told me to start the invisalign a whole month earlier than expected. So, no worries in my case. 

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Topic starter Posted : 10/01/2020 12:36 pm
greyham liked
NoctilucentNikki
Eminent Member

@toomer

Hello, please don't fear this over the pain. Yes, it hurt, but really, only for 2-3 days. The rest of the discomfort has been no where near as bad as my past migraines, headaches, neck pains, injections, years of TMD... it's really not so bad. My split happened when i was at work, I popped some tylenol and went back to floor. It's been worth it. 

Yes, words that have a Q or K have a slur to them, but we're all adults. If I think I sound funny, I just say here, check it out, I got screwed! and most people think you're bad [Rude Language or Insults are not tolerated] for cracking your own pallet! I speak a lot at work too, but remember, no one cares if you slur a little. Everyone is more concerned with themselves than others, and if you get the sides cut off after awhile like I did, it does help.

My TMJD has been great until recently. However, I fully expected to be sore while my teeth are moving. Now that I am in invisalign, everything is in motion. So really, whether you get braces or aligners, it's going to be sore. You're moving bone! Tylenol has been enough, I still have norco so I save 1 for bad days. But, I have not been any worse than before. Only better.

And oh, the gap had no effect on my speech. Just having a piece of metal in your mouth does that.

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Topic starter Posted : 10/01/2020 12:45 pm
NoctilucentNikki
Eminent Member

And yes, I finally updated: https://mseat35.blogspot.com/

The SFOT bone grafting went so well!

I am in week 5 of Invisalign. Teeth can be a little sore, but very tolerable.

TMJD pain is slight to moderate, to be expected while teeth move.

Overall, doing great and the MSE gets taken out March 24th 😀

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Topic starter Posted : 10/01/2020 12:50 pm
Apollo liked
Ezcanor
Active Member

@noctilucentnikki

Hello, so I want to ask a question about your treatment with SFOT and what exactly is being done or how it works to expand your mandible after MSE? I live in NYC and I'm going to get treatment for MSE in the summer as my palate is narrow and my breathing is bad for a person who loves to work out. Did you Breathing get better? And where did you get your treatment done for MSE and SFOT?

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Posted : 10/01/2020 1:08 pm
NoctilucentNikki
Eminent Member

@ezcanor

Hello, I liked this article: https://www.perioimplantadvisory.com/clinical-tips/surgical-techniques/article/16411515/surgically-facilitated-orthodontic-therapy-sfot-maximizing-case-outcome

Basically they peel your gum down, add bone material, then stitch it back up. The new material becomes one with your bone, and your lower teeth have real estate to move into. You can't split or expand per say on your lower, but you can add bone around the periphery. I got an extra 2mm all the way around. 

But maybe you won't need this. Maybe your lower is wide enough already. I would ask your doctor about their plan to match the lower teeth up with your uppers first. Mine was just way too narrow and I got almost 12mm of expansion on the upper with my MSE. 

I am from the Detroit area and see local doctors here. 

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Topic starter Posted : 10/01/2020 3:50 pm
toomer
Estimable Member

@greyham

You said:  "I notice they gave you ibuprofen, which is a non-steroidal anti-inflammatory (NSAID). I read somewhere or heard someone (maybe Ronald Ead?) say that it's better to avoid anti-inflammatories because inflammation was part of the process that helps bone grow in the newly opened suture."

I believe that this is correct, although I am no expert.  However, I am someone currently nursing a stress fracture from too much jogging (really want to try to get off of CPAP) and from what I have heard - yes, anti-inflammatories are actually counterproductive for bone-related pain.

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Posted : 10/01/2020 4:40 pm
greyham liked
greyham
Eminent Member
Posted by: @toomer
Posted by: @greyham
 
I have underdeveloped jaws and nasal obstruction causing severe sleep apnea, possibly the result of extraction/retraction orthodontic work done when I was 13. I am considering a MARPE and Damon braces to improve my airway but I'm terrified about how much this is going to hurt. I still remember the pain of braces in high school; but life with sleep apnea is horrible so I'm trading off a short period of intense pain against ongoing fatigue, headaches and an early death. Seems like a good trade-off if only I can get through the pain.

I'm curious to ask why you are leaning more towards something like MARPE ... as opposed to something like a Vivos DNA appliance?  Not trying to push the DNA in any way, but I'm getting a consult on one next week ... so I am collecting as much information as I can.

Thanks for your question! I'm actively researching this right now and visiting a lot of specialists to fully explore my options. I visited orthodontist Derek Mahony recently and he referred me to an ENT surgeon to investigate DOME and MMA surgery, as per the Stanford Protocol; so the other alternative to MARPE I'm considering is surgery. The success rate is high but it looks nasty. Derek said I would need 12 months of braces before the surgery, and I would need to be on CPAP in the meantime; so no matter what I do I realised I need CPAP to stay alive while I'm getting a permanent treatment sorted out. I've been on it for about a month and I'm hoping my general health will improve while I explore my options to expand my jaws and sleep naturally again.

Compared to the surgery I'm contemplating, Vivos DNA looks really good to me in principle. The mRNA version would replace my Mandibular Advancement Device I've been using to potentially lower the pressure required by my CPAP machine. There are heaps of glowing patient testimonials online and they have published a paper with case studies showing it is effective in severe cases like mine. I'm not entirely convinced by all the epigenetic and biomimetic claims though. If it's really that easy to expand the jaws over time with what is essentially a glorified 3-way acrylic Schwartz expander with fancy springs on the front, why do people go to the hassle of having screws put into their palate or having the palatal suture surgically separated with DOME or SARPE?

It's also not available in Australia yet where I live, although Dr Singh recently visited Sydney and presented a lecture attempting to recruit local dentists which I gatecrashed. The presentation was similar to this one and contained a lot of hype about the results people were getting and plenty of buzzwords, but very little substance on the actual device itself. Members of the audience were getting restless towards the end because Dr Singh didn't want to show them the actual device. It was a bit weird to be honest and not the sort of thing that resonates with Australian audiences who prefer people to get to the point. The cost for dentists to do the training was quite high (tens of thousands of dollars) and the markup on the device is also very high, so it's expensive. The company do most of the assessment work for them and there isn't a lot to do at the regularly scheduled follow-up visits, so it's potentially quite a lucrative deal for the dentist to get into the exploding sleep apnea market. If it works, it would probably be way cheaper and less painful than surgery and orthodontic treatment. The guy who organised the tour said that he personally underwent the Vivos evaluation procedure just to be able to experience it first-hand, and ended up discovering he actually had undiagnosed sleep apnea. He said after a few weeks the mRNA had cured his brain fog. They overcatered the event and gave me a $50 tray of prawns to take home afterwards, but I'll still try to be objective about what I heard.

I'm not so concerned about how long the DNA treatment would take, especially if CPAP restores my health so I can enjoy life in the mean time. I don't see CPAP as a long term solution but I could tolerate it for a couple of years while doing DNA. I've also been mewing fairly consistently for a few weeks, and increased my consumption of crunchy foods as jaws grow in response to mastication; well, they do in children anyway. As for adults, I wonder. I eat my carrots raw now, dipped in hummus to make them more palatable, for instance. I started to notice that my 6-month-old Mandibular Advancement Device doesn't fit so well any more; it hurts putting it in now and feels as though it's pulling my teeth inwards; which is the exact opposite of what I want. I got it after finding my CPAP trial intolerable due to mask fit and pressure issues, and since getting the CPAP a month ago have used both together. However the last few nights I haven't put the MAD in because it hurts my teeth and I wonder if it's really necessary, and I haven't noticed any difference. This is good news for a few reasons, including that if I proceed with surgery I'll need to be able to sleep with the CPAP alone since the MAD won't fit any more. In fact, anything I do is going to render the MAD an obsolete chunk of $2K acrylic. One side-effect of the MAD is that my lower jaw now sits further forward during the day than it used to, and I can't chew on my molars any more. It is possible that the device has merely relaxed my jaw muscles to the place where my lower jaw is meant to sit, and now my front teeth clash due to my underdeveloped upper jaw (a.k.a. retrognathic maxilla). I will need some sort of treatment to fix this, which is another reason why CPAP alone isn't enough for me long term.

As you point out, another upside of DNA is that it appears you don't need braces afterward because there is no diastema. It seems the gradual expansion can allow the teeth to settle in what would have been their normal uncrowded position, like they would have if I'd eaten enough crunchy foods as a kid and/or an orthodontist had used an expander or self-ligating braces on me; which may not have been invented back then.

I've also been in touch with Theodore Belfor who invented the Homeoblock appliance, which appears to be essentially the same thing as DNA without the fancy/expensive Vivos marketing. He and Dr Singh are coinventors on the patent which appears to cover both devices. He asked me to send him my CBCT scans to see what he recommends, and a couple of weeks ago I visited a dentist who did a CBCT scan and is preparing his own treatment proposal which I'll learn about at my next appointment on Monday. I have no idea the relative cost of Homeoblock vs DNA yet.

Surgical standards for sleep apnea generally define "success" as a 50% improvement in AHI, but this is bullshit in my opinion; it just allows the surgeon to feel good about what he's done and claim higher than reasonable success rates. A 50% improvement would still leave me with an AHI of 25, which is at the high end of moderate sleep apnea; and probably a hugely compromised quality of life. Most sleep apnea surgery has low success rates even by this metric. A true cure reduces your AHI to < 5.  MMA has high cure rates so it's the only surgery I'm contemplating; possibly with nasal turbinate reduction which I may not need if palate expansion is successful in reducing my nasal airway resistance. DOME with MMA gives a better result than MMA alone, so I'm thinking of having DOME with self-ligating braces to prepare for MMA, and then make the final decision after 12 months of that about whether to go under the knife. Relapse rates for MMA surgery are low, although sleep apnea is a degenerative condition and there are cases of people who have had their sleep apnea successfully cured by MMA surgery and later had it return. Studies suggest that they probably would have been even worse off if they hadn't had the surgery in the first place.

If wearing a fancy acrylic expander in my sleep for a couple of years can avoid all that pain, I'm up for it. My inner skeptic says that Vivos DNA sounds a little too good to be true. Why would anyone get their palatal suture split and their jaws cut apart if the gentle pain-free force of DNA really works as well? Rapid Palate Expansion in adults generally fails or has high relapse rates because it's just pushing on teeth and not actually moving the bones of the skull apart. That's why Prof Won Moon and the like put screws into the palate with MARPE expanders like MSE. Why would they go to that length if it wasn't really necessary and you could widen the thing with gentle pressure applied over a long time? I don't see any real magic in the DNA or Homeoblock that a regular RPE expander doesn't have, save the fancy springs. Maybe Homeoblock really does work the way Dr Belfor says in the video by flexing in response to swallowing and this does widen the palatal suture and jaws. If so, I'm up for it and it's going to put a lot of MMA surgeons like Dr Li out of business. I haven't seen a study showing relapse rates from people using DNA and I suspect you've got to wear the device for life afterwards as a retainer to prevent your teeth shifting back. In his Sydney presentation Dr Singh said it was so comfortable that he/people (I can't exactly remember) want to wear it anyway. My bullshit detector went off at that point.

Vivos make a point about the mRNA being approved by the FDA to treat mild-moderate sleep apnea, but if you read the 510(k) Premarket Notification for the Vivos mRNA, the claim which the FDA accepted is based on Substantial Equivalence to other Mandibular Advancement Devices including the SomnoMed I have. In the submission they say "An adjustment mechanism enables the devices to be customised for each patient", but don't claim that it will permanently expand the jaws and cure the condition, or use any of the buzzwords like biomimetic or epicgenetics; like they do in their marketing. They even downplay the adjustability of the device in the conclusion to argue that it's still substantially equivalent to a regular old MAD. This allows Vivos to accurately claim that the mRNA is approved for the treatment of mild to moderate sleep apnea in their presentations, but probably leaves most listeners believing that the FDA agree with the biomimetic claims for the device; when in fact they have not. It's fuzzy because MADs and CPAPs are presented as an effective "treatment" for sleep apnea, but they don't address the cause and they certainly don't cure it because you need to keep using them for life. Some research indicates that they either make the condition worse over time, or at best don't prevent it worsening naturally. While I still wonder whether there is a mistake in the data, there is an astonishing study on long term MAD use which shows that after 15 years of using an MAD most people's condition had deteriorated to the point where they had a worse AHI with the device in place than they did without it! I have no idea how this could be true but that's their conclusion. It's ironic that Dr Singh mentions this study in his presentation while also noting that the mRNA is approved by the FDA... as an MAD. Biomodelling Solutions Inc, the precursor to Vivos, got busted by the FDA for not having adequate design control systems in place. That may not matter to you, but I was a Biomedical Engineer before a mystery illness which I now think was undiagnosed sleep apnea forced me into early retirement, and it doesn't bode particularly well for Dr Singh; especially when I suspect his grand claims of being able to re-enable dormant adult stem cells to grow new bone via some mysterious biomimetic process may be playing a little fast with the truth.

That said, if the Vivos device was available in Australia and I knew it would work for me, I'd get it. I just can't predict either of those two things, so I keep exploring other options too.

So that's where I'm at right now. I expect it will change again after the next specialist I see. I have no real experience yet with anything other than MAD and CPAP at this point. Your milage may vary but please let me know your thoughts and conclusions. I feel better knowing that other people are sorting their way out of this maze too.

Cheers,
Graham

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Posted : 10/01/2020 6:22 pm
shanky27 liked
greyham
Eminent Member

@noctilucentnikki

Thanks Nikki. I appreciate you taking the time to reply. One other thing I'd like to ask: Am I correct in assuming that you didn't have any kind of corticpuncture, like shown in this video? You've said you were a "B" indicating relatively easy suture separation. I read somewhere that it's recommended for men over 20 and women over 40 getting MSE, and I don't recall you saying anywhere that you had/needed it, so I'd just like to clarify.

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Posted : 10/01/2020 6:41 pm
mr-sand-man123
Active Member

@greyham

I agree, a lot of the Vivos DNA stuff seems too good to be true.....but at the same time, there are a lot of testimonials and photos of people who have clearly widened their palates or straightened their bites, and fixed TMJ and sleep issues. I've even seen a couple people on this forum speak about how it's worked for them. It definitely looks like it does something. I can't imagine it just being totally useless. 

I'm personally dealing with what I think is UARS (i'm seeing an ENT and doing an overnight sleep study in a couple of weeks, which will hopefully reveal more)...but I pretty much fit the description of UARS 100%..... but I'd say my airway issues are somewhat mild compared to severe OSA people....so I'm leaning towards the Vivos appliance because i've got a pretty narrow high-arching palate, and a crossbite, which I think have gotten that way over the past 20 years after I had my palate widened as a kid , due to mouth breathing and poor tongue posture. So I think something like the DNA appliance could probably give me enough space in my mouth to alleviate the crowding that's occurred gradually in my adult life and give me some more nasal airway space.

I also live in Vancouver Canada, and there are pretty much no other options. I would have to travel to Alberta to get a DNA appliance, which isn't too bad, but all these other options like MRE, MARPE etc. don't seem to be available to me at all. So I'm really kind of putting all my eggs in the Vivos basket because the only other alternative is braces + surgery + braces again...over the course of a couple of years. Which just sounds so much more daunting and expensive, I can't even bring myself to do that. I almost have to just gamble on the DNA appliance and hope it does something. CPAP and MAD just don't appeal to me at all, for the reasons you mentioned...they don't solve the problem, they've inconvenient and intrusive, and they potentially make the problem worse. I'm really most interested in correcting the structural issues that are causing the sleep disordered breathing, and right now the DNA appliance just seems like the most doable option for me, but all the doubt surrounding it is definitely making me nervous.

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Posted : 10/01/2020 7:41 pm
greyham liked
greyham
Eminent Member

@mr-sand-man123

I'm totally with you. Please keep me/us informed with what you learn in the sleep study and anything else you discover. It is all pretty scary and I hope you find a good solution. Life with breathing issues really sucks.

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Posted : 10/01/2020 7:47 pm
NoctilucentNikki
Eminent Member

@greyham

Correct, I did not need the punctures for the MSE. However I didn't split for almost a month. 

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Topic starter Posted : 10/01/2020 9:09 pm
greyham liked
PaperBag
Estimable Member
Posted by: @mr-sand-man123

I also live in Vancouver Canada, and there are pretty much no other options. I would have to travel to Alberta to get a DNA appliance,

Similar situation for me as well. I inquired to my local oral surgeon about Vivos and they referred me to someone in Vancouver who used the appliances, so I phoned them and they apparently didn't, to the point of the receptionist not knowing what a DNA appliance is. There are only a dozen Vivos practitioners in all of Canada, and they're contained in two provinces, which makes me wonder if any of them would agree to remote treatment (via another orthodontist, not self-done) unless it's too complex. A lot of posts say "ask your dentist to order you a DNA appliance, Biobloc, etc.." like it's that easy when they aren't trained to use them.

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Posted : 11/01/2020 7:54 pm
mr-sand-man123
Active Member

@paperbag

I spoke to a dentist in Edmonton and she said it would be possible to go there for the initial assessment and scans and molds or whatever they need to do, and then they could send me the appliance. And it would probably be possible to find someone locally who could help make alterations over time as necessary, but a lot of the adjustments can be made yourself for the first 3-6 months. She said the lab that makes vivos appliances in Canada is in Vancouver so they could maybe help with that in some way. I’d maybe need to go to Edmonton once or twice over the course of a year for some kind of check up or alterations. I’m not totally sure but I’d be willing to cross that bridge when I get to it. I also think we could see a Vivos provider pop up in Vancouver over the next year or two. There’s also a couple providers in Washington a couple hours away from a Vancouver if that’s at all doable. 

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Posted : 11/01/2020 9:19 pm
PaperBag
Estimable Member

@mr-sand-man123

That sounds promising. I thought the initial assessment was comprised of the same molds and CBCT scans you can do anywhere, unless they always require a sleep study. Some people have said that the Vivos appliance is little more than a complex Schwarz expander, which makes me wonder if they could just tell another doctor how to fit/turn the device, send progress updates back and forth and that's it. Ronald Ead had remote treatment with a sagittal appliance under one doctor and it flared his teeth, using Vivos with two doctors sounds much safer. Vancouver should be the next city to have Vivos; it's one of the biggest cities in the country and they somehow don't have any despite the lab being there, it's ridiculous. Repeated travelling is probably something I'd only do if my case was severe, but it's pretty straight forward (high but wide-ish palate and recessed face, slightly asymmetric bite, no crowding). I have a consultation with a regular orthodontist on Monday and will see how open they are to doing anything in general, as even that is a roadblock, generally.

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Posted : 12/01/2020 2:56 am
greyham liked
greyham
Eminent Member
Posted by: @noctilucentnikki

Correct, I did not need the punctures for the MSE. However I didn't split for almost a month. 

Thanks for clarifying Nikki; and for sharing your story with us. It's really helpful.

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Posted : 12/01/2020 2:57 am
toomer
Estimable Member

@greyham

Sounds like you and I are in very similar situations, with severe OSA.  Looks like you had an AHI of about 50?  Mine was 41 in the sleep lab.

Is the fact that Vivos is not available in your market currently, potentially influencing your viewpoint?  Something to ponder.

You've clearly done a ton of research.  I've actually struggled to find the actual Vivos FDA filings so far to look through their efficacy data - but I'm sure I'll track that down soon enough.  What I did find, though, was that in this peer-reviewed journal article ... he absolutely seemed to be able to cut AHI in half for folks if you look at the data table he supplied.  So if you have mild sleep apnea of an AHI of maybe 8-10, a 50% reduction could be a complete cure.

I'm not expecting the device will take me from AHI 41 down to below 5 (would be nice if it did) on its own.  But there are a couple other triggers I could pull later if it shows promise - such as, I still have my tonsils ... so I could get those out.  And I'm also jogging and cycling multiple times a week to try to get from a BMI of over 30 (when I had my sleep study) to 24-25 - where (statistically speaking) incidence of OSA is far less.  I'm hoping that a shotgun approach of all three of those  might just cure me.  It's going to be a multi-year process it ... but it beats staying on CPAP the rest of my life.  

Even if I can only get down into the 5-8 range, that might be low enough that I could get by with a MAD nightly, instead of CPAP.  That would also be a "win".

But even if it doesn't cure my OSA, I also have some TMJ/D symptoms as well - and the headaches from that are just killing me on a daily basis.  So even if I only cured TMJ/D and reduced my AHI way down (but not sub-5) that would also be a success for me.

As far as the DNA vs. other maxillary expanders ... even though I've only spent about 10 days so far researching all of this, what I'm picking up on is that the DNA seems a bit more targeted towards correcting sleep/breathing issues ... whereas some of the other MSE approaches seem to have higher appeal with the "I don't like the looks of my face" folks.

As for DOME, and opening up a huge diastema like that between the front two teeth?  I just can't ever see myself doing that.  But even more practically, if I ever did think that might be necessary ... I'd perhaps want to do that after trying DNA, maybe getting 3-4-5mm of expansion out of that first ... and if that wasn't enough, then do something more extreme.  Starting with something more conservative ... doesn't rule out more extreme options later.  But jumping right to something more extreme?  I have patience, I can wait a year or two through a DNA process ...

Good luck, keep me posted on your progress!  I will do the same with mine!  Do they have direct messaging on this web platform?  I didn't see anywhere to message you directly - I didn't want to keep littering up Nikki's thread about her progress.  

 

 

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Posted : 12/01/2020 10:04 am
Rhoste
New Member

@mr-sand-man123

Hello Sand Man and Paperbag,

I’ve been following Niki as I’m a Dentist in Vancouver with Ortho, sleep and TMD training.  I am in the valley of decision about limiting my practice to “Airway Management “. Currently sleep medicine is the biggest portion of my treatment.

Becoming a Vivos provider is on my radar.  While at the World Sleep Congress ( held in Vancouver this year) I spoke at length with Dr Annmarie Heit, which is most likely who you consulted with in Edmonton?  She is a leader in Vivos hierarchy. The drawback for becoming a Vivos certified practitioner is the very steep fee:  upwards of $65,000. USD that’s just to “buy in” then there’s the travel to Colorado for the training, multiple sessions with staff.... the investment is huge.

Then there’s the lack ( to date) of good research backing the therapy.  Dr. Heit assured me that it is coming, but not much yet.  Then there’s the opinion of my colleagues..... very mixed opinions, some similar to yours, that this is just a glorified Swartz expander???

In general Vancouver is the “black hole” of airway providers.  That’s why I’m on a mission to select solid treatment modalities and start using them.  Currently I’m making sleep appliances to treat the OSA and TMD issues, but will not treat the ortho portion till I find something predictable.

I’m currently more interested in MSE ( thus subscribed to this forum) but have many courses lined up in 2020 to get clear on best approach.  I will be attending the Instructors Institute with Facial Beauty Institute this year, ( Dr Gallela et al of agga/cab fame) and hope to bring awareness through teaching in this area, to our local dental community so that more practitioners will start treating!

As far as remote treatment, I would not advise it.  Also treatment needs to include Myofunctional therapy, good nutrition, sleep hygiene, breathing exercises, and of course adjustments.  So much more than “just wearing an appliance “

I am very interested in all of your journey’s as it helps me learn.  I will update here as I learn more.  So excited to see such educated patients out there.

good luck.....

 

 

Creating Beautiful Smiles and Vibrant Health

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Posted : 12/01/2020 1:58 pm
mr-sand-man123
Active Member

@rhoste

Thanks for your reply.  It definitely seems as though Vancouver has no options for this sort of treatment which could make it a potentially big opportunity for someone to get involved in it. 

I spoke with Dr. Kim Bolt in Edmonton....I sent emails to probably 5 different dental offices, including Dr. Heit, and Dr. Bolt was the only one that responded, but she seemed pretty confident that it wouldn't be too complicated to do remotely. Obviously not ideal, but I'm a very pro-active person and would do whatever I need to do myself, as long as it doesn't involve some technical modifications to the device, in which case I would make sure a qualified professional is involved. I'd be willing to travel to Edmonton a couple of times over the course of a year if I had to. From what I understand, a lot of the adjustments that happen over time are done by the patient anyway....until bigger changes to the appliance need to be done. I'm already on top of the myofunctional therapy, nutrition, sleep hygiene and breathing exercises myself....it's just the structural airway problems that are limiting my progress.

Because of the lack of options in Vancouver, I'm pretty motivated to make it work with someone in Alberta, because I don't really have any other options other than surgery which just seems way too invasive and daunting for me. From everything I've read and seen about the Vivos appliance, it does seem to be effective most of the time in at least expanding the palate and correcting some malocclusion. I can't be sure if it will solve me sleep problems but I figure it's good to expand my palate and fix my bite regardless. There doesn't really seem to be any other option for a person in Vancouver at this point.

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Posted : 12/01/2020 3:41 pm
Rhoste and greyham liked
greyham
Eminent Member
Posted by: @toomer

@greyham

Sounds like you and I are in very similar situations, with severe OSA.  Looks like you had an AHI of about 50?  Mine was 41 in the sleep lab.

Yes, my AHI was 49 in my first sleep study. 5 months of didgeridoo playing brought it down to 39 and an MAD took it to 31; but it's still severe and I feel exhausted all the time with flu-like symptoms similar to Chronic Fatigue Syndrome. Losing weight isn't an option for me and exercise is intolerable at the moment too because it wipes me out. It does appear that a shotgun approach is needed and what you're doing sounds sensible to me. I'd also suggest cutting dairy, sugar and wheat out of your diet and going paleo ketogenic to help get your BMI down. Once you've done all that, the only treatment I know of that offers massive reductions in AHI is MMA surgery; but yes it's pretty extreme and like you I'm exploring all the more conservative options first.

There are plenty more articles on Vivos's articles & publications page. I agree, for mild-moderate it looks pretty good. I wouldn't expect to find anything more from the FDA about them though since all they needed was the 501(k) Premarket Notification to be accepted in order to market mRNA as a treatment for mild-moderate sleep apnea. In their study of adults with severe sleep apnea, the mean AHI of the study sample went from 45.9 hr-1 ± 10.5 to 16.5 hr-1 ± 8.8 with no appliance in the mouth; which is still at the lower end of moderate. I'm suspicious about long-term relapse since relapse rates are normally high in adults undergoing RPE. My sleep specialist said he would be happy if I got my AHI down to < 25 with no daytime symptoms; but I'm not so sure that's going to be a long term success. The fact that Vivos isn't currently available in Australia is a showstopper for me right now, but they're actively recruiting and if I had to wait, say, 12 months that wouldn't be a dealbreaker. The other treatments I'm exploring are going to take years anyway. I could also go to Korea or the US to get it fitted. Dr Belfor seemed keen to evaluate me for Homeoblock remotely so I don't see that it would be impossible to do long distance. I'm more concerned about whether it will really cure me long term, as in AHI < 5 and no need for CPAP.

The ENT I saw said my tonsils are fine and weren't affecting my airway but your milage may vary. The research I've read suggests removing tonsils is a first-line treatment for children with OSA, but makes no difference in adults unless they're really enlarged. Beware that an MAD may wreck your bite and I'd suggest reading that study on long-term effectiveness before buying one. My CPAP is effective at reducing my obstructive apneas below 5/hr, but now I have 5 - 10 central apneas/hr that I didn't have in my initial sleep study. I'm not sure which option is less bad long term. I went with CPAP because the MAD on it's own wasn't sufficiently effective for me. It'll also be rendered useless by any of the other treatments I'm contemplating, all of which will take some time and require me to be on CPAP in the meantime. I didn't have any TMJ issues until I started using the MAD; I wound it forward until my TMJ started hurting and then wound it back again until it didn't. Now my TMJ is fine (a dentist confirmed this) but my front teeth clash preventing my molars engaging. My headaches were killing me too even though they weren't from TMJ, so I feel for you.

Vivos are definitely targeting the exploding OSA market whereas the MSE seems to have broader applications, but I suspect the distinction is heightened on this forum where people are willing to consider putting themselves through that kind of treatment just for aesthetic reasons. For us it's life-threatening; but I do also like the idea of fixing my facial profile back to what nature intended. Have you seen the program with identical twins with crowded teeth one of whom was treated by Dr John Mew and the other who had extraction orthodontics? No wonder I'm still single; I'm literally not as attractive as nature intended. If it pisses you off enough, you might want to fill in this survey that @entelechy posted a link to in a thread about MSE.

My guess is that the diastema from DOME would be the same as from MSE, assuming successful separation of the palatal suture. In both cases the suture separation is doing all the expansion work and you'd need braces of some sort to fix it. With Vivos you're getting teeth movement (too?), which may be a good or bad thing depending on whether yours are pointing inwards or not. My bottom teeth do point inwards, which is positive because it can be fixed without expanding the bottom jaw, which is really hard as it has no suture. I believe @NoctilucentNikki had SFOT specifically to solve this problem by building new bone on the jaw to move her lower teeth into. Yikes. I'm guessing you're not planning on jumping right into that either, especially if you've seen the surgical pictures.

I tried PM'ing you. You can have a go PM'ing me on The Great Work PM page. You can also contact me directly on my blog. I can export and send you a truckload of links from my research on maxillary expansion to treat OSA if you like. It's a work in progress. Let me know what you find too. Good luck!

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Posted : 12/01/2020 4:42 pm
greyham
Eminent Member
Posted by: @rhoste

I’ve been following Niki as I’m a Dentist in Vancouver with Ortho, sleep and TMD training.

...

As far as remote treatment, I would not advise it.  Also treatment needs to include Myofunctional therapy, good nutrition, sleep hygiene, breathing exercises, and of course adjustments.  So much more than “just wearing an appliance “

Thanks for weighing in. It's awesome having an actual dentist contributing here. Since Vivos isn't available in Australia yet, one of my options is getting fitted in South Korea or the USA and then doing the adjustments myself. I'm sure the dentist who fitted my MAD could take the moulds for Vivos, but I know they haven't done the training yet and I doubt the company would be up for that given how much they're milking out of the dentist in training fees. I gather most of the cost that the patient pays for the device stays with the dentist and the sales pitch for the costly training is that it gives the average dentist a foot in the door to the exploding sleep apnea treatment market. I've done quite a bit of Myofunctional therapy, nutrition, sleep hygiene and breathing exercises already but perhaps I'm not a typical patient. The issue I'm concerned about with remote treatment is what to do if something goes wrong. For me it's the choice of remote treatment, no treatment, or some other treatment...

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Posted : 12/01/2020 4:58 pm
entelechy
Trusted Member

@toomer

We are all on the same boat   I too have apnea etc from the extractions and have researched solutions for three years now with over 160 doctors interviewed  : the answer is more complicated --

Dna will move teeth: it may tilt them out of occlusion   It is uncomfortable   It will not change the structure of your face - macilla   It will not get forward expansion. But it is non invssive 

 

Mse will change the actual bone - and give you a wider mouth.  It will ipen nasal airway for better breathing.  It is kess uncomfortsble than the dna as takes less space. It can get anterior space as well with facemask   The diastema is a ridiculousky small prpb as can be closed in a few months. The big problem is that it hss risks:  see eatlier duscussion and posts about other sutures splitting.  

There are thousands if not millions of us in the same boat. Please take my survey.  If enough people sign it, I may have the numbers necessary to launch a class action suit to get at least all revrsal costs paid for.  Am working with a lawyer now.   Please pass the survey on to anyone you know who has had premolar extractions. Pm me if you would like further info

entelechy

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Posted : 12/01/2020 5:47 pm
greyham liked
mr-sand-man123
Active Member

@entelechy

Well DNA claims to do more than move teeth, and a lot of the results I've seen seem to be doing more than that. Unless they are falsifying all of their results, and the hundreds of dentists that are providing DNA appliances are all full of it, then I don't think it's just moving teeth.  I've also seen other people on various forums and blogs talk about how it's expanded their palette, and they've shown photos of this transformation.

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Posted : 12/01/2020 6:09 pm
greyham liked
toomer
Estimable Member

@entelechy

I think I took your survey when you posted it over on Reddit?  Chasing down further information is what eventually got me over here.

Quick question on a couple of your statements, however:

"Dna will move teeth: it may tilt them out of occlusion"

With an adjustment rate of 0.25mm every 4 days, this seems to be well with the range of not trying to push the maxilla too fast ... based on what I have read.  I've seen expansion rates quoted for the rapid MSE appliances which are notably faster.

Also, if this was really a concern - couldn't a DNA specialists simply slow down the protocol?  0.25mm adjustment every 5-7 days?  Sure, the process would take longer ... 

Also, given the shape of the appliance, it would seem like a lot of the outward force is being applied via the acrylic that is expanding.  Yes, there are some springs on the teeth, but given that they are springs (instead of something like a fixed wire) to me, instinctively I would think that would be easier on the teeth.  Springs inherently have some "give" ...

"It is uncomfortable."

This does not seem to be the testimonial of actual patients.  Quite to the contrary, most say it's not really uncomfortable at all - at least not any more than any other appliance in one's mouth.

Where do you get this from?

"It will not change the structure of your face - maxilla"

Back when Dr. Singh was creating this back at BMS, he actually posted differential 3D bone scans showing that there was osteogenesis.  That's changing the structure of the face.  Maybe not as much as something like DOME, but there are physical changes.  Unless you are implying that he faked those results?

 

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Posted : 12/01/2020 8:51 pm
entelechy
Trusted Member

@toomer

Hello Toomer--

About the osteogenesis:  it may happen, but probably not to the degree you think.   Alvealor remodelling is uncertain (movement can sometimes cause bone loss) and the actual millimeters achieved is debatable.     With MSE, you are not causing osteogensis. You are literally splitting the palate in HALF,  opening the space 5 mm, and waitng for bone to grow.  Through studies, it has shown that bone growth ranges between 40-60 percent of the result, and the rest is dental alvealor.  MSE also expands the JAWS: it does more than just split the palate as it sends force throughout the skull, splitting other sutures as well.  (hence why DNA is perhaps safer-g but less results).

Comfort: I confused the DNA with FAGGA, but I did remember reading posts from people who found it very bulky and uncomfortable.

I will eventually putting together a website which will have a comprehensive source of all this info and every reversal treatment, plus doctor videos explaining each device, plus and minus.  Would that be helpful for you?   

entelechy

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Posted : 12/01/2020 9:00 pm
greyham and Rhoste liked
toomer
Estimable Member

@entelechy

Yes, I am definitely devouring any and all information I can find ... however, I'm due to talk to a specialist who has spent 30 years treating TMJ and sleep disorders in my area, and he's become a Vivos provider ... so my inclination is to maybe start with DNA since it is a bit more conservative/safer.  If that doesn't work, going down the path MSE a year or two later could be a possibility.

You did post something which caught my attention, though - alveolar remodeling.  This may be a contraindicator for me for DNA, as my dentist told me I've experienced a little bit of bone loss due to some mild periodontal disease (I've got a few small "black triangles" around my lower front incisors as a result).  It's nothing that my dentist has been too concerned about yet (he hasn't referred me to a periodontist) but it's certainly something I'll need to discuss with my doctor.  

So are you implying MSE actually regenerates dental alveolar as a part of the overall process?  Honestly, the biggest turnoff for me for something like DOME, is the massive diastema I saw on a patient on the website for the doc that does it out in Stanford.  I do public speaking for a living, I don't know if I'd even be able to speak correctly if I suddenly had a 5-10mm gap between my two front teeth (even though orthodontics could fix it, it takes time).

Do you have any more reading on alveolar remodeling/regeneration during MSE?  That certainly would be interesting to read.

Finally, on remodeling the face - here's some detailed data that Vivos provided ... lots of measurable changes to the face overall, so I'm still not certain I can agree with you on that ... but I do appreciate the back-and-forth!  

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Posted : 12/01/2020 9:20 pm
entelechy
Trusted Member

@toomer

the MSE does not nothing to the alvealor:  it's the actual bone of the palate that gains 5 mm of expansion.   And the other bones of the lower mid-face expand and gain bone as well (which one may or may not want).

yes the bone loss is a concern with any appliance that pushes on teeth: can cause more loss.

The diastema--trust me--is a tiny issue!     I am a professor and journalist, and at this point I am proud of all I have to go through to get my health fixed due toa mutilaiton from orthodontics.

I have worn braces for a year, which does not bother me at all.  A diastema can be moved in 2-3 months.   And the one on Dr. Liu's site is huge:  most are smaller so don't be scared.

The DOME is safer than MSE because it controls the splitting in the skull, which can be random. That is what I worry about. But yes who wants surgery?

I did braces which is like the effect of DNA, and got some expansion and some alvealor development.  I too played it safe. Now I am going for the big stakes.

entelechy

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Posted : 12/01/2020 9:25 pm
NoctilucentNikki
Eminent Member

@toomer

..."I don't know if I'd even be able to speak correctly if I suddenly had a 5-10mm gap between my two front teeth..."

Just want to note, my expansion was apparently 11.8 mm, but I only ended up with a 2 mm gap, because my front teeth were originally overlapped. Also, the gap didn't change how I spoke, the expander itself did though. You don't realize how often your tongue slams into the roof of your mouth until you have one in there, that's for sure. And it is really only my Q's and K's I slur with. Plus, we're all adults, no one cares, but they also think you're awesome for splitting your own palate. I def feel like my street cred went up, even if I have a hard time saying my own name 😛

 

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Topic starter Posted : 12/01/2020 9:29 pm
greyham liked
toomer
Estimable Member

@noctilucentnikki

Thanks for the info!  My front two teeth don't currently overlap, so that's why the thought of a 1cm gap just immediately makes me thinks I'll have significant speech problems for months.  Certainly, while the expander is in-place I'd expect that would have some effects ... but for whatever reason, those just seem less concerning to me.  

"even if I have a hard time saying my own name" - LOL, hadn't even thought of that!

Again, thanks so much for posting all of your experiences!  I know you've posted this across all your postings so far - but how many months are you into this so far, and how many to go ... and are these timelines more or less in-line with what your docs said to expect?

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Posted : 12/01/2020 9:49 pm
Rhoste
New Member

@toomer

Hi Toomer,

where are you located?

fyi, the Dna appliance is not easy to wear, and you definitely cannot speak with it in. 
For adult treatment fixed appliances are usually best, for overall compliance.

Derek Mahony is my original teacher and mentor from 18 yrs ago when I first did ortho mini residency.  He is really supportive of the MSE tx for adult tx and face mask for those needing anterior movement.  
I’m hoping to get first hand info from my colleagues in US that are using multiple modalities. I will report here what I find out.

It will take years for the actual research to be done, so right now all we have are case studies and patient reports as they are moving through treatment.

Exciting times.  I’m just so amazed at the level of knowledge that is shared on these forums!

 

 

 

Creating Beautiful Smiles and Vibrant Health

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Posted : 12/01/2020 10:03 pm
greyham liked
toomer
Estimable Member

@entelechy

"And the other bones of the lower mid-face expand and gain bone as well (which one may or may not want)."

Wouldn't the "bones of the lower mid-face expand[ing]" via DNA also experience that as well?  I recognize the teeth tilting concern vs. MSE ... but if my mandible is expanding via either approach, do I potentially get alveolar regeneration with both?

"The diastema--trust me--is a tiny issue!  ... And the one on Dr. Liu's site is huge:  most are smaller so don't be scared."

If we were talking 2-4mm, that's probably not too bad.  It's not really an appearance thing which concerns me (entirely), but phonation.

Fortunately, the day after I speak with the Vivos doc ... I was due to talk to an oral surgeon about bone loss anyway, and it turns out they do perform distraction osteogenesis procedures according to their website ... so I may be able to get an assessment from them on DOME as a possibility, ask them to see some photos of their patient's diastema, etc.  

I promise you, I will consider all options! (you are the reason I'm even here to begin with, because of your survey post over on Reddit)

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Posted : 12/01/2020 10:19 pm
toomer
Estimable Member

@rhoste

You're right, this forum is absolutely amazing!

I'm in the DC area, so there are a couple of good Vivos providers in the area - including a doctor who (according to another post somewhere no this forum) has probably trained half of the Vivos providers out there.

If you have anyone in the area you'd suggest for DOME/MSE types of procedures, happy to speak with them as well.  I'm going to seriously consider both before pulling the trigger.

"the Dna appliance is not easy to wear, and you definitely cannot speak with it in"

So this dude over on YouTube has been posting videos of his first few weeks with the appliance (although he went dark after a little while, but keeps promising a new video any day now).  He didn't say it was all that difficult to wear.  And he most definitely can speak - he records several parts of his videos with the appliance in-place.  Does it sound like he has an acrylic retainer in his mouth?  Of course.  I wouldn't expect any less ... I remember when I had my upper retainer at age 12 after my braces came off. It took me months to learn how to speak properly with that being in.

And that's part of the appeal of the DNA, put it in at 7pm after dinner ... take it out at 7am before work.

 

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Posted : 12/01/2020 10:27 pm
Rhoste
New Member

@toomer

I’ll let you know who s in your area for dome/MSE  if I get any solid leads.
and I forget you guys on here are very informed about the challenges with adult treatment.  Most adults cannot/ will not tolerate appliances due to lifestyle and speech issues. Those that do , reap the rewards as they do work on adults primarily through alveolar remodeling and some sutural expansion..... depending on the appliance designs

MSE is a whole nother thing.

 

 

Creating Beautiful Smiles and Vibrant Health

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Posted : 13/01/2020 12:30 pm
PaperBag
Estimable Member

@rhoste

Is alveolar remodelling a desired outcome? I thought that led to teeth tipping and should be avoided as much as possible?
By the way, do you hear much about reverse pull headgear? It doesn't seem to get much attention on here anymore and I wonder if it's fallen out of favor as a treatment option/adjunct compared to seeking expansion in all directions via appliances.

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Posted : 13/01/2020 3:08 pm
greyham liked
NoctilucentNikki
Eminent Member

@toomer

"...how many months are you into this so far, and how many to go ... and are these timelines more or less in-line with what your docs said to expect?"

I had the MSE installed July 30, 2019.

My palate split Aug 26th after 53 turns. I was expecting the split to happen after 2 weeks +/- a few days, but my ortho wasn't at all surprised it took so many turns. I stopped turning after 11.8 mm because the MSE bent and was also perforating into the sides of the roof of my mouth and couldn't expand any further. 

I had the SFOT bone grafting Nov 12, 2019 and had the sides of the MSE removed at the same time. Stitches came out after 2 weeks. 

I started Invisalign on Dec 11, 2019. I imagine I will be in this about a year or so. 

I will have the MSE removed completely March 24, 2020. It needs to be in for 6 moths after you stop turning so the palate has time to stabilize. 

So yes, this time line is pretty right on to what I expected from the doctors. No real surprises. 

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Topic starter Posted : 13/01/2020 4:01 pm
greyham and Rhoste liked
Rhoste
New Member

@paperbag

Alveolar remodeling is desirable.  The alternative is tipping teeth ( not stable) or pushing them out of the Alveolar ridge which can cause dehiscence. It’s all about the type and amount of force.  As I said before, splitting the palatal suture and letting fill in is a completely different mode of getting Maxillary width.

When teeth are moving ( outwards in the case of expansion) and the proper force is used in the proper way,  the bone “goes along for the ride” remodels in the direction the teeth are moving. This is ideal with slow steady forces over time. (osteoclasts/osteoblasts)

As far as face masks, consistently used in class 3 occlusion of growing individuals to develop the Maxilla anteriorly.  Very predictable in kids.  I don’t think we have enough data for use in adults unless there is a surgical component, but this is all relatively new treatment.

Im currently researching like you all to the find best treatment and predictable results.

 

 

Creating Beautiful Smiles and Vibrant Health

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Posted : 13/01/2020 4:53 pm
mr-sand-man123
Active Member

@toomer

I've also been following "Smash Face Jimbo's" videos on youtube....and from what he's been reporting, the DNA appliance has changed his life for the better, and he has experienced a fair bit of movement in his jaw. I also saw some other people post in the comments about how it's been life changing for them as well.  I know it's a lot of anecdotal evidence, and there could be some confirmation bias going on, but there isn't much else to go off of at this point. From everything I've seen, it does seem like the appliance is 'remodelling' to a certain extent, and is improving sleep/quality of life etc. I haven't really found any examples of people saying it just flat out did nothing, or ruined their teeth/jaw.

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Posted : 13/01/2020 5:18 pm
greyham
Eminent Member
Posted by: @entelechy

With MSE, you are not causing osteogensis. You are literally splitting the palate in HALF,  opening the space 5 mm, and waitng for bone to grow.

Could you clarify what you mean by this @entelechy? Osteogenesis literally means "development and formation of bone", so if bone is growing as a result of using MSE, why don't you consider that osteogenesis?

I couldn't find any article directly saying "MSE causes osteogenesis" in a quick 5 minute search, but this article about Mini-Implant Supported Rapid Palatal Expanders, of which MSE is one example, says: "RPE is considered to be a method for sutural distraction osteogenesis."

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Posted : 13/01/2020 5:37 pm
greyham
Eminent Member
Posted by: @mr-sand-man123

I've also been following "Smash Face Jimbo's" videos on youtube....and from what he's been reporting, the DNA appliance has changed his life for the better, and he has experienced a fair bit of movement in his jaw.

I'm also eagerly following Smash Face Jimbo's progress, but I'm a little wary. I would attribute the rapid early improvement in his sleep apnea to the mandibular advancement function of the mRNA, not its expansion function. I asked him about this in a comment on this video, and he gave a lengthy answer which essentially said that he still has a long way to go. Long treatment time doesn't particularly bother me; I'm more concerned about the possibility of long term relapse since the device is pushing on teeth and other tooth-borne palate expanders tend to relapse significantly in adults... which is why the bone-anchored ones like MSE were invented. Obviously Jimbo won't be in a position to answer that question for another 10+ years; has anyone else seen any data from Vivos about long term stability in its patients?

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Posted : 13/01/2020 5:49 pm
toomer
Estimable Member

@noctilucentnikki

Thanks for the update!  I'm sure you'll be glad to get your Q's and K's back after six months, and to be able to clearly say/spell your name again!

Is there an expectation to wear an upper retainer for the rest of your life (or perhaps at least while you sleep) to make sure that there is no relapsing?

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Posted : 13/01/2020 6:10 pm
toomer
Estimable Member
Posted by: @rhoste

Alveolar remodeling is desirable.  The alternative is tipping teeth ( not stable) or pushing them out of the Alveolar ridge which can cause dehiscence. It’s all about the type and amount of force.  

So this leads me to believe that someone who has experienced some amount of bone loss due to periodontal disease ... may be more at risk to try a Biobloc/DNA type of procedure, versus a DOME/MSE?  (i.e.: me)

My dentist hasn't seen the need to refer me to a periodontist yet, so I don't think my case was that bad ... and I've probably had some of the clenching/grinding that commonly occurs with OSA too ... but he did note on one of my x-rays that there was some bone loss in the lower jaw.  I'm going to see an Oral Surgeon about a guided tissue regeneration procedure later this week ...

Given that expanding the lower jaw must - by definition - be creating new bone, couldn't that help with some bone loss issues (if they are not too severe)?

 

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Posted : 13/01/2020 6:20 pm
toomer
Estimable Member

@greyham

What does "relapse" mean in this context?  Does it mean the maxilla potentially starts to revert to its original size after a period of time?  I mean, I guess bones do grow and shrink, so that could certainly be a possibility.  But wouldn't a simple fixed-size upper retainer - perhaps worn for the rest of one's life - help mitigate that?

And that may not seem like a desired outcome for some, but for you and I with severe OSA ... if I knew right now that something like a DNA would cure me in 9-18 months, and that there was no risk of tipping teeth, and that all I would have to do once the procedure was complete was wear a fixed retainer at night ... I'd write a check to my nearest DNA provider today!  Because that sure beats strapping up with a CPAP every night for the rest of my life!

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Posted : 13/01/2020 6:26 pm
greyham liked
mr-sand-man123
Active Member

@toomer

In regards to re-lapsing, I think that is also where tongue posture/Mewing comes in.  I could be wrong but I'm pretty sure if you have proper tongue posture at all times, your palette can't exactly relapse because it's being held in the proper position by the tongue.  When I was like 10 years old (I'm now 33), I had a palate expander, and later a tongue-thrusting device to train my tongue to stay on the top of my mouth....but I stopped seeing my orthodontist once I was 'fixed', and no one really emphasized the importance of tongue posture to me so I guess I just slowly started developing bad habits, mouth breathing and letting my tongue sit below the roof of my mouth, and over the past 20+ years everything slowly regressed without me noticing, until this past year I started noticing sleep problems, and after researching a ton the past few months I've finally discovered this palate/airway connection which is what has brought me here. Now I have a pretty narrow high-vaulted palate, and my tongue barely even fits up there, not to mention it can't really reach the top to 'Mew' properly. But it seems like you could easily get a retainer to hold the position as well, or if you were to use a DNA appliance, could you not just keep using that as a retainer, just without expanding it any further?

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Posted : 13/01/2020 6:55 pm
toomer
Estimable Member

@NoctilucentNikki you must be so close to the end of your journey by now - I think you said late March?  I'm sure we'd all love to hear an update soon!  Thanks again for sharing the details of your journey!

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Posted : 06/03/2020 8:38 am
NoctilucentNikki
Eminent Member

@toomer

Hello-

I am scheduled to have the MSE removed 3-24 and I am nervous but ready and excited to get it out! I don't mind it but want to talk normally again, and am tired of food getting caught in it. I am nervous about the pain/shots but mostly because when the sides were removed, the sides were trimmed flush to the roof of my mouth. This left each of the 4 corners perforated into my tissue, so I just anticipate being very sore or raw there. I am not sure if stitches will be necessary. 

https://mseat35.blogspot.com/

I probably mentioned it in my blog, but I over-expanded the MSE and the sides poked into the tissue/sides of the roof of my mouth. It didn't hurt, but I see now how the MSE is embedded in me. I am just very narrow and very high so I see how the sides did this. This happened because the Doctor thought my MSE had 75 turned and I believe it only had 60. I made it to around 65ish before I bent it and it simply would not turn anymore. 

Now, I am on week 13 of invisalign, which is going very well. My gap has already closed! The expansion did NOT cause more TMJD pain. In fact, I am so much better already. However, when your teeth are constantly moving, the bite is always changing. This makes some of my teeth sore and my jaw click more often some weeks. Each tray of the invisalign makes me sore in a different area, but it's still mild and very acceptable compared to the issues I've had my whole life. 

I know I should update the blog, I will after the 24th so I can report on the MSE removal 😉

 

 

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Topic starter Posted : 09/03/2020 9:31 am
greyham
Eminent Member
Posted by: @toomer

@greyham

What does "relapse" mean in this context?  Does it mean the maxilla potentially starts to revert to its original size after a period of time?  I mean, I guess bones do grow and shrink, so that could certainly be a possibility.  But wouldn't a simple fixed-size upper retainer - perhaps worn for the rest of one's life - help mitigate that?

And that may not seem like a desired outcome for some, but for you and I with severe OSA ... if I knew right now that something like a DNA would cure me in 9-18 months, and that there was no risk of tipping teeth, and that all I would have to do once the procedure was complete was wear a fixed retainer at night ... I'd write a check to my nearest DNA provider today!  Because that sure beats strapping up with a CPAP every night for the rest of my life!

I can only speculate based on what I've read but what I was thinking when I talked about "relapse" was that tooth-borne expanders mainly move teeth through the bone and they tend to move back afterwards, whereas bone anchored expanders like MSE grow new bone in the palatine suture and this new growth doesn't shrink so much after it's removed.

Yes I'm totally with you that wearing an appliance like DNA for the rest of our lives isn't such a big deal compared to CPAP. I recently visited an ENT who does MMA surgery to see if it would work for me, and he said it would not liberate me from CPAP as my lower jaw is already a fair way forward from using my MAD and moving my top jaw far enough forward would make me look like a chimpanzee.

So my remaining options seem to be: MSE with facemask, DNA device, Homeoblock, FAGGA, or Damon Braces. I just want a decent sleep at night!

ReplyQuote
Posted : 15/03/2020 7:15 am
Apollo
Reputable Member
Posted by: @noctilucentnikki

I am scheduled to have the MSE removed 3-24 and I am nervous but ready and excited to get it out!

Was your MSE removed as scheduled, or was it delayed due to COVID-19 restrictions? Hope you are doing well!

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Posted : 25/03/2020 1:41 pm
NoctilucentNikki
Eminent Member

@apollo

Hello-

Yes, my appointment was delayed. The doc called me herself and made sure I was in no pain and was OK for another few weeks. Here in Michigan, that was at the time that we were to shelter in place and only essential workers could work until April 13th. However, clearly things are changing by the day and I have no idea when I will have the MSE out. However, I am fine and I'm sure having it on a little longer will only help stabilize the new growth.

I am on week 16 of inviasalign and my diastema has completely closed though! 😀

 

ReplyQuote
Topic starter Posted : 03/04/2020 7:06 am
Apollo liked
mamabear2020
New Member

@noctilucentnikki

@entelechy  

Thank you both for detailing your experiences with adult palate expansion.  I have been on debating whether or not to proceed forward for myself and my almost 18 year old son and it helps to have the input of people experiencing this.  Like @noctilucentnikki, I am a nervous wreck and get a bit of anxiety before any medical procedures and palate expansion and skull parts moving sounds very scary to me.  I'm quite nervous, so I still have lots of questions, so here goes:

My background: I have a pretty substantial overjet and fairly narrow, high palate.  I had "braces" put on by a dentist (not an orthodontist) in my late teens.  No extractions and all he did was lower my front teeth and left me with lots of gums showing when I smile and my teeth do not align correctly at all.  I live in near LA, very close to Dr. Audrey Yoon, had no idea about palate expansion but happened to get a consultation with her in 2018 thinking I would get some extractions maybe and finally fix my bite issues.  This is when she introduced me to palate expansion.  Her treatment plan was to use the Marpe device, but due to my age (early 40's), she said I will get maybe 1 mm of a gap if I'm lucky.  She also referenced this video (link below) to show how the palate expansion should help the overjet, but said I may not solve the overjet issue completely.  I never followed through because 1 mm of opening my palate didn't seem like the pain, costs, suffering would be worth it all.  She did a brief visual exam on my son and said he is at the right age to do palate expansion using Marpe as well and he would get some airway benefits out of it.

https://www.youtube.com/watch?v=KWHYmrd_jdM

Enter Dr. Moon... Because of my own dental woes and before I knew anything about narrow palates, I was very diligent to have my son get his braces done early on and about 10 years ago, he had 4 extractions done and completed treatment.  Letting the ortho take extract teeth is one of my biggest regrets now.  I looked back at his ortho photos pre-treatment and he had a very beautiful wide palate.  Now, his palate is very narrow although is teeth and bite are aligned. He also breathes through his mouth.  When I learned about palate expansion with Dr. Yoon, I took my son to get a consult with Dr. Won Moon and his resident at UCLA.  He does all his work through his residents now and does not have a private clinic.  His resident was very happy with my son's current dental situation and said that he has great alignment, but I asked Dr. Moon about the benefits of palate expansion.  he agreed that they could use his MSE device to expand his palate basically "move whatever he wanted". He seemed very confident that it would be successful as he is under 20 years old. So at this stage, I've got a few questions: 

1.  Marpe vs. Mse vs. Dome: What is the difference between what Dr. Yoon calls "Marpe" and Dr. Moon's "MSE"?  Dr. Moon seems very confident with the MSE for older adults, while Dr. Yoon was upfront and said the expansion will be minimal.  Also, what are the advantages and disadvantages of Dome?

2. Would it be better to go with Dr. Yoon who is in private practice, or Dr. Moon who works through residents?  Or go with another expert, Dr. Richard Ting who is not too far from where I am?  Dr. Ting is also an expert with MSE.  I am lucky they are all located in Socal.  

3.  What about the mandible?  I would like the least invasive way to take care of the mandible, and the SFOT procedure seems to be it.  Will the SOFT procedure actually expand the mandible?

4.  My son's wisdom teeth have erupted and growing in at an angle.  Could palate expansion allow for proper growth?

5. Lastly, palate expansion with cracks near the eyes and around the skull is scaring me to death.  Does anyone know the long term implications of this? I have nightmares of my eyeballs becoming loose in their sockets and what not lol.

I'm sure I'll have some more questions later, but for now, these are my main concerns.  Thank you!

 

ReplyQuote
Posted : 14/04/2020 2:19 pm
canuker
New Member

@rhoste Please consider providing MSE! I can't find any providers of it in BC. I will happily be your first client if you end up taking the plunge.

 

I made an account just to let you know.

 

Cheers!

 

Brian

ReplyQuote
Posted : 03/05/2020 1:40 am
AmiMM
Active Member

@noctilucentnikki

 

Hi Nikki,

 

Wondering how your treatment is going now? Still pending with covid?

ReplyQuote
Posted : 03/06/2020 1:58 pm
Rhoste
New Member

@canuker

Hi Brian!

just saw this today.... I was signed up to take Dr. Won Moon course in Atlanta, and Covid happened.

Currently I am considering focusing on Sleep and TMD only, and refer ortho.  I have two colleagues interested in potentially taking the course.  

I’ll certainly check back with you as things are just opening up again now.

Good luck,

Rhonda

 

 

 

Creating Beautiful Smiles and Vibrant Health

ReplyQuote
Posted : 03/06/2020 2:52 pm
NoctilucentNikki
Eminent Member

@amimm

Hello!

I am doing great actually. I am on week 23 I think of Invisalign and looking good. I did not miss any aligners because of Covid. However, I still have my MSE in. It's been in since July 30th so the removal was the only postponement. I hope to have it out this month, depending on when my periodontist will reopen and reschedule me.

ReplyQuote
Topic starter Posted : 03/06/2020 3:37 pm
Apollo liked
AmiMM
Active Member

@noctilucentnikki

 

Where can we see any photos of your process/ progress in the MSE?

ReplyQuote
Posted : 04/07/2020 10:47 am
NoctilucentNikki
Eminent Member

@amimm

Hello- Here is my blog: https://mseat35.blogspot.com/

I will be posting an update after July 13th - That is the day I have the MSE removed! 😀

I know it's been awhile but Covid pushed back the removal from March to July. I am in no pain and just going along with invisalign. My teeth look great so far, but again, a pretty smile is just a bonus for me. Stay tuned.

ReplyQuote
Topic starter Posted : 04/07/2020 12:17 pm
Apollo liked
Apollo
Reputable Member
Posted by: @noctilucentnikki

I will be posting an update after July 13th - That is the day I have the MSE removed! 😀

Does the periodontist or orthodontist remove the MSE? Congratulations on having it out!

ReplyQuote
Posted : 10/07/2020 11:56 pm
NoctilucentNikki
Eminent Member

Update Time: My MSE Removal didn't go as planned 😖 

https://mseat35.blogspot.com/

 

ALSO- I am seeing the Ortho today and will post progress pictures later!

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Topic starter Posted : 14/07/2020 10:45 am
Apollo liked
Apollo
Reputable Member

Sorry to hear you're stuck with it in your mouth for a little longer! You'd think the mechanism would stop turning when you reached the end. I hope the new tool does the trick! 

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Posted : 14/07/2020 9:45 pm
NoctilucentNikki
Eminent Member

Hello! My MSE was removed on July 30th 😀

Sorry for the late update, but blog is up to date now: https://mseat35.blogspot.com/

I'm on week 36 of Invisalign and just moving along. Nothing exciting to report, but still breathing better, not snoring, not waking up with rancid breathe. And I realized also, I didn't get sick at all the last year:

1. Every single year I've had a sinus infection at least twice. Bronchitis, ear infection, and a cold every fall through winter. And, early spring allergies.

2. However,2013-last August I lived with someone who smoked, but only in the garage, even though I could smell it everywhere in the house. Cigarettes and pot. And a lot of both. Just don't want to give the MSE all of the credit, this [Rude Language or Insults are not tolerated] hole didn't help my situation.

3. I left that person and moved into an apartment 1 year ago and even given a VERY high amount of stress all at once last August-Sept and over the last year overall, I haven't had 1 incident of being sick. No netty pots, no nasal sprays, no sinus decongestant pills, nothing. 

4. My palate split late last August, 1 year ago.

Heck. Yeah. Unforeseen bonuses from expansion. 😎 

 

ReplyQuote
Topic starter Posted : 22/08/2020 4:32 pm
Apollo liked
AmiMM
Active Member

@noctilucentnikki


Hi there! Not sure if you’ll get this message. But Nikki, I’m wondering how you are doing with your dental situation after last year’s MSE journey. Any side effects? Would love to know, thanks so much. 

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Posted : 13/06/2021 7:45 pm
Apollo liked
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