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Has anyone had successful alleviation of TMD symptoms via FAGGA+braces+tongue-tie release (dentist David Cook, in London, is suggesting this for me)  

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annaemg
New Member

Wow, what an amazing, knowledgeable and supportive community this is - I've been living on this forum for the last 24 hours, I forgot to make dinner last night.

I had never heard of FAGGA (fixed anterior growth guided appliance) until it was recently suggested to me as a potential cure for my chronic TMD issues (created/compounded apparently by an underdeveloped maxilla) - so here I am wondering if it is actually safe and whether or not it can work, if others are going through it for the same reason as me, or have been through it, and what they have discovered in the process. I have read a lot about its limitations (forward teeth flaring, minimal growth of only the anterior dentoalveolar - no skeletal growth, loss of tooth and gum integrity...Donald Ead's wobbly front teeth!), and I'm feeling scared and uncertain about what to do next.

(My brief history: I'm 34 years old and have had TMD issues for the last 6 years (constant clicking, locking, pain while chewing, malocclusion (mandible to the right), grinding teeth at night, migraines - all pretty destructive when it comes to enjoying life). My regular dentist has experimented with many varieties of night-time splints over the years but he admits he is just experimenting. Recently my mandible has come forward with the splints, but it feels unstable, and only my front teeth meet when I bite now). So, I finally went to see a TMD specialist. Enter David Cook. I saw him a week ago. He says that I have an underdeveloped maxilla (most likely due to tongue-tie in the first instance, compounded by mouth breathing, poor tongue positioning, possibly poor posture too) and that this means there isn't enough space for the jaw joint to function smoothly, that my mandible is compressed and changing shape and functionality due to that compression. I have a 'strong' tongue-tie, a prominent chin, and my upper and lower jaws are short and narrow (I think I have a high vault) - see the attached picture for the angle between chin and nose (apparently in a properly developed jaw the lips would reach the chin-to-nose line that I've drawn in blue). Dr Cook suggests FAGGA to make space for the mandible and TMJ via extending the maxilla. Followed by braces to bring the back teeth forward to close the FAGGA-made gaps (and correct flaring?). And at some point before or after all this, to have my tongue-tie released surgically (with 4 months tongue physio pre and post). 3 years treatment)

I do think I have an odd profile but I can definitely live with that - but I cannot live with TMD for the next 50 years. 

Thank you for any help/advice/reassurance! Sorry I know this post borders personal case/ public forum question - I really wasn't sure where to put it. Anyway, I'm very grateful to this forum already, even if no one can answer my specific question here 🙂

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Posted : 28/07/2020 8:54 am
MJON
 MJON
New Member

Hey! 

The person you saw sounds like they really know what they're talking about to comment not only on the current issues but also what may have caused them (the tongue tie) and to make suggestions on rectifying them. I think everything they have suggested sounds really in depth, but the only thing I would be worried about is the FAGGA treatment itself (I have heard mixed reviews on it).

I posted in here recently about being uncertain about treatment I had been suggested to receive, and the best advice I got was just to keep seeing people and receiving consultations until you have a lot of opinions to compare. If this is the first person you've seen it may be worth going to someone else with the opinion he gave you and seeing what the next person makes of it. Then once you have a lot of opinions you can pick to go with your favourite. 

I'm not sure where you're based, but I visited Richard Cousley in Peterborough and he really knew his stuff and talked about palate expansion with screws in the upper palate. The treatment he suggested for me was also much cheaper than places I had seen in London (although I admit the treatment he suggested for me was less work, as I wasn't eligible for palate expansion with his methods). 

I also hope you don't mind me asking about costs to see David Cook? I'd love to have a consultation with him as he seems to give a really rounded opinion, and we seem to have pretty similar issues! 

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Posted : 13/08/2020 8:23 am
sinned
Estimable Member

All I want to say is don't do AGGA, there is great risk for damage. There are better alternatives (MSE + facemask). FAGGA doesn't really have any evidence it works, and there's a lot of anecdotal reports of it causing damage which makes sense because of the nature of the device, if you want to know more search up Ronald Ead/jawhacks, he has a lot of info on AGGA as well as MSE. On the other hand, there is evidence that MSE+facemask works and it is used primarily for class 3 cases where the maxilla is underdeveloped. I urge you to not do AGGA, it is a scam/quack device, in addition, I'd take diagnoses of tongue ties with a HUGE grain of salt, having a frenulum is natural and not a sign of a tongue tie yet many seem to want to cut this off, of course there are legit cases of tongue ties but tread with caution.

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Posted : 13/08/2020 6:49 pm
esh296
Active Member

Im 28, female, with TMD as well. I need 5mm of expansion. I consulted David Frey in LA and he recommended a course of therapy that was 27,000$ which included FAGGA, braces, and splints. This is out of the question expensive fo me. 

I had a consult with Dr. Zaghi in LA who said that Frey was a really good practitioner of FAGGA, and that it really comes down to if the ortho knows what they are doing or not. Zaghi recommended FAGGA for me as. well,  but I protested, and he said I would also get Results with DNA but wouldn't be as good. He said that the DNA is more one size fits all, and that whatever practitioner you go to will do a reasonable job. 

I consulted with a few other doctors as well and considered many options including surgery and MSE/facemask. 

I am going forward with the least invasive solution first, which is myofunctional therapy, and then on my own I am correcting my posture and taping my mouth at night which is when my mouth is open. If myofunctional therapy doesn't help fully (and it should expand my jaw 2mm or so), I may have to get my tongue tie removed, or get a homeoblock/DNA or bioblock device. I prefer those to FAGGA because I would only have to wear at night instead of all of the day and its way more gentle than MSE or FAGGA, which has the danger of only tipping your teeth. 

I hope that helps. E

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Posted : 13/08/2020 10:59 pm
annaemg
New Member

@mjon thank you for your response, and I agree - for me it was the first time anyone had looked at my jaw issues as part of something developmental and structural, connected to other parts of my body and other symptoms. It was a huge relief to talk to someone who was knowledgeable about how everything fits together. I was't able to ask him questions about AGGA at the time, because, as I said, that was the first I heard of it. (I have since read a lot of mixed reviews - although some people have been through it with Dr. Cook and had good experiences overall too). Thank you - I'm going to see a few other people to see what they say too, and compare and contrast. I imagine that mostly dentists and orthodontists are suggesting what they personally know and use, and that's always a bit of a limitation. I will see if I can get an appointment with Richard Coulsey too, I know someone in a facebook group who will be seeing him for MSE - after AGGA (she has a tiny airway and after many consultations this is the route she's taking). Then there is also Dr. Amir in Putney who has a TMJD treatment that you pay £10,000 up front for and commit to seeing him every two weeks for 18 months - from what I've heard his treatment is about cranial alignment and fixing jaws by fixing posture and swallow etc (I'm very shady on the info, I've just heard these things second hand). And Charlotte Bishop in Bristol, a friend recommended her to me as a second opinion after seeing David Cook (she specialises in malocclusions). An initial consultation with David Cook is £275, and most likely he will ask you to get a scan by CT Dent nearby, which is £220. So, £500 before a treatment plan. I'm still waiting to hear back from him (I had my appointment on the 22nd July) and so we haven't discussed details of costs for what might come next yet. I'll let you know. 

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Posted : 14/08/2020 6:55 am
annaemg
New Member

@sinned Thanks for this advice! I would proceed with great caution if I do AGGA. I'd want to know that my teeth and dentoalveolar were strong enough to be put under such strain (I'm not sure how exactly I would find this out though!). Someone else suggested SFOT to me (they had had a very bad AGGA experience) as a method of expanding the maxilla, with the eventual result of more tongue-space and decompression of the TMJ). But I hadn't heard of SFOT being done on its own, only as a part of other treatments.

I know what you mean about the tongue-tie - it's in vogue to diagnose them right now, but I have compared my tongue with friends' tongues and my frenulum is a lot thicker. I can't touch the tip of my tongue to the roof of my mouth with my mouth open. Also, the way I talk and swallow appears to be 'incorrect' (i.e. tongue thrusting) - possibly due to the tongue not being able to do its thing properly (but could equally be to do with lack of space, which may or may not be originally due to tongue-tie)

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Posted : 14/08/2020 7:07 am
annaemg
New Member

@esh296 Thank you for this - I've heard great things about Dr. Zhagi - my myofunctional therapist did some training with him and worships him. I'm a bit reassured that he has some faith in FAGGA. But there seem so many uncertainties and potentially horrific outcomes (not to mention the HUGE costs!) that I'm also leaning (like you) towards trying to work naturally with what I've got (myofunctional therapy, perhaps tongue-tie release, tongue posture and function improvement and body posture improvement (she says, sitting on a sofa cross-legged and bent over her lap top :/ ) 

I will keep asking around and I'll post updates here - or I might just make an adult case post instead. 

Anyway, thank you all so much for your support!

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Posted : 14/08/2020 7:12 am
esh296 liked
WrongNotes
Active Member

I'm currently eight months into ALF expansion with 'Excellence in Dentistry' in Surrey.  My dentist was the experienced Andre Hedger, although he retired at the start of COVID and his protege Caroline Bromley has taken over.

ALF is intended to be much gentler than a lot of other expansion appliances.  The problem I see with a lot of these other touted appliances, is that they're too aggressive.  As much as I've valued Ronald Ead's content, I think he's repeatedly pushed the boundaries of what his body was capable of, and he ended up paying the price with his wobbly teeth.

Is ALF the best?  I don't know. I'm not sure who or what to believe anymore.  I'd be skeptical of anyone who talks about a method or appliance being the holy grail, and that includes MSE.

Also I don't think there is any dentist/ortho out there who has the complete picture when it comes to fixing all these problems.  In many cases, a single device won't address all pathology, and often a full body reorganisation is needed (e.g. sorting out feet, pelvis, thorax).

I know how stressful dealing with all this can be, so I hope you're able to find some answers.

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Posted : 14/08/2020 11:58 am
brt0512 liked
MJON
 MJON
New Member

@annaemg Every time I have a consultation they ask me if I have any questions and at the time I don't... Then I go away and research the treatment they have suggested and I have way more! I'm going to start taking a list of questions with me before each one haha. 

I think one of the best treatments that seems to actually make a different to the structure of your whole face (as oppose to just moving the teeth to the edge of your aches, which will just impact the lower portion of your face and perhaps not solve your jaw joint issues) is MSE with the screws, as looking at videos by Ronald Ead even though his teeth are not great right now (which I believe he says is due to AGGA) the difference in his facial structure is very obvious. So if you can see Richard Cousley and you are able to receive palate expansion with screws that may be a good treatment plan for you. 

But as you've said, the more opinions you get the more you have to chose from; I agree with WrongNotes in that there probably isn't a single dentist out there that will be able to completely solve all the problems related to these issues, but the more people you see at least you can get more thoughts and have them comment on other treatments you have been suggested. 

I'm looking at booking a few consultations in Bristol as I'm quite close to there, but I hadn't come across Charlotte Bishop up until now. I will put her on the list of people to visit as I contacted David Cook and as you said he informed me it would cost £500 before he has even suggested a treatment plan (which is okay if it's the right treatment plan, but would like some more opinions before I go to him). 

I will keep you posted on my consultations in Bristol and see if any of them would be suitable for you - I saw Mary Lo in London and she was very knowledgable on the subject (especially jaw joint issues), but I'm really trying to avoid extractions and that was suggested as part of the treatment before a palate expander (but a suggestion if you were looking for more people in London to visit). 

I've actually been looking for Facebook groups who cover this sort of thing - could you leave a link to the one you are in? I haven't found any good ones yet! 

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Posted : 16/08/2020 2:09 pm
annaemg
New Member

@mjon hello! I actually booked to see Richard Coulsey on your recommendation but they told me that he’s not working with TMD patients at all, and also that he’s not doing MSE anymore. This part was a bit sketchy as they also said that he was doing MSE IF another dentist referred you to him for it specifically. But they also said he ‘doesn’t do it any more at all’. I was confused! 

Thank you for another London name. I actually saw your post about that and was equally baffled by the extraction followed by expansion protocol.

Who are you seeing in Bristol? I’ll let you know how things go with Charlotte Bishop (unless you see her first!). Also, I have heard good things from other patients seeing David Cook. But, as you know, he does AGGA and CAB and I’m not ready to rush into that. It seems like MSE is just not an option in the UK though. 

I have heard back about treatment prices now - for either orthotic treatment or AGGA and CAB, or a mix of both. I can DM you exact costs but I just don’t know enough about confidentiality rules etc and don’t want to get in trouble... Anyway, very expensive. And to think that it could have been avoided. And the NHS would never cover anything like this - although essentially all I’m asking for here is a functional jaw and bite. Gaaah.

What are your particular issues? (You can DM me if you prefer) Sorry you probably went into that already in your post.

Facebook groups:

this one is run by LVI so it is naturally going to promote success stories, but it’s still interesting:

https://www.facebook.com/groups/tmjtmdosa

this one is a general AGGA CAB group, lots of negative experiences but also helpful:

https://www.facebook.com/groups/ALFAGGAUsers

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Posted : 19/08/2020 3:16 pm
MJON
 MJON
New Member

@annaemg that is so strange! In my appointment he discussed palate expansion with screws in the roof of the mouth and said that he would recommend it for me BUT that the bone in my palate was too dense so I wasn't eligible. He knew I was self referred though so I don't know why he brought it up for me as another dentist hadn't referred me to him (very strange!). 

As for ones in London, I've found one more where they were going to give me a consultation over Zoom but I'm yet to hear back from them (I'll chase on it and let you know if they're worth your time. They're on the same street as I went to see Mary Lo I believe!). 

So far I've got an appointment at thebristoldentist with Scott (I spoke to the receptionist and he's a consultant so she said basically if he thinks you need to see multiple people e.g someone for your teeth vs someone for your jaw joint he will be able to refer you on). The appointment is in the next couple of weeks.

I've also been speaking to someone from stokebishopdentalcentre who has referred me onto Charlotte Bishop same as you (no appointment date yet however so you will probably see her first!), but please let me know as I have been looking at her profile and she seems to really be in the know with the jaw joints specifically.

As for David Cook, I sent him an email and he seemed very knowledgable, but the amount he quoted me for the investigations was quite expensive compared to the other consultations I've had so far (and same as you I'm very cautious about AGGA). 

I have no doubt it would be expensive based on the consultation prices haha! But please don't share them with me if you are worried... I can sort of guess given that most people think paying anything for braces is expensive. And you're right about the NHS - was told all my life my teeth were fine don't need anything done etc, now I'm being told I need lots done and I have jaw joint problems!

I'll DM you now about the particular issues as it's good to speak to someone in the UK about all this. 

And thank you for the FB groups - I will take a look 🙂

 
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Posted : 21/08/2020 9:52 am