CBCT Am I a candidate?

[Dom12]

Hello,

I'm a 32 y/o male with a few health issues. I have Ehlers Danlos which is a connective tissue disorder..which affects the joints and apparently the bones as I also have low bone mass which is classed as Osteoporosis. I also have a stable mild Chron's disease which apart from losing weight and having stomach issues is alright at the moment.

I joined this forum to get a better understanding of my jaw situation as I can't get any proper help from where I'm from.

I have suffered from Jaw/TMJ related issues for 5 years or more...and it's only getting worse. It's a weird one because I have a lot of clicking that it seems only I can hear.. it can happen when I move my jaw side to side or during opening/closing. The biggest issue is that it feels compressed for most of the day. and that is felt most when I close my mouth and when I bite my food. It feels like my mandibula is going backwards and the TMJ gets compressed behind my ear which causes pain/cracking, muffed sound(like if you were on an airplane), harder time breathing, general muscle aches and problems with stiffness that I resolve by moving it around a bit.. especially in the mornings. I also suffer from headaches, dizziness and pain/numbness around my temporal bones. The interesting thing is the relationship between my neck and my jaw. I can have episodes where I'm really struggling to chew foods(pain and lack of power) after having some sort of hard clank in the jaw...and often times it also happens up in what seems to be the upper cervical spine.

Whenever I jut my mandibula aswell as open my mouth using my hands... a lot clears up for me. And I found out that when I chew, flexing my neck and looking downwards eases the pain and makes chewing feel better.

Also, I feel like one side of my jaw is actually longer than the other which makes things weird. Perhaps it's a muscle imbalance, or just in my head.

Ever since I was little I always felt congested and I thought it was normal. For a very long time now I feel like my breathing has been bad. Especially when lying down on my back.. I also wake up numerous times during sleep and don't feel refreshed. I also wake up with a lot of pain iny my jaw and I believe I'm grinding my teeth at night. I have done a sleep study but couldn't fall asleep so it was worthless.

In addition to all of this, I feel like my pallete is narrow.. especially the lower one. My upper pallete looks to be high arched, but maybe i'm mistaken.


Now I have done a CBCT scan, but it seems like for some reason it is cut near the chin as well as the upper skull. I gathered some images for you to look at as well as my own front and profile.

My main question is, besides whatever info you guys can provide is, what are the chances that my jaw(which could be totally fine fwiw) is responsible for my TMJ issues, and would a jaw surgery or any other procedure(surgical or nonsurgical) can alleviate some or all of my discomforts? I also have aesthetic concerns as it's important.

Thank you guys so much and I appreciate your assistance.

These are my scans:

https://imgur.com/a/RXbeR17

Some pictures:

https://imgur.com/a/TllCzzl

My neck is really weak and it feels like my profile does not match my front.

[GJ]

A friend of mine has EDS, so I know about that condition, and I think it's going to add a completely unknown element to any surgery. I doubt many jaw surgeons even know how it will affect an outcome. Your TMJ could be from that. It could be from the asymmetry (though, I don't think this looks bad on the scans). I'd think the first step is diagnosing why you have the TMJ, the condition of the joint, etc. Without knowing what that has happened and is happening, you're not going to know how to proceed.

The thing is, you look good. I'd be cautious of surgeon because of this. There are diminishing returns. The more normal you look at the start, the harder it is to get a great outcome. Your palette does look narrow, which means you'd probably be looking at a 3 piece LeFort, which adds more risk, especially given your condition. If you do decide on surgery, make sure to ask your surgeon about that - if he intends to do a 3 piece, experience level with that, etc, especially in relation to EDS.

I would not do surgery in your position and look for non-surgical solutions, but that's with the knowledge I have now. If you figure more of the puzzle out let us know.

[Dom12]

Thank you for the reply.

Yes, I hate operating under those restricting parameters of EDS, etc. I wish it was different...but sometimes you gotta try which may be a wrong way to approach life with EDS in general.

My father has a really wide and contoured jaw with wide pallet. My mom has a narrow face and she has EDS. But I feel like my jaw has grown in a suboptimal way due to mouth breathing because as a kid I had a really wide pallete interestingly enough with really wide face. Over the years I developed bad posture, mouth breathing and my face grew differently.

Putting EDS aside, as I lack proper understanding of this whole complex, do you see anything that stands out as far as my mandibula, maxilla, plane, airways, etc?

I'm obviously not going to undergo a LeFort 3, I don't think. Is that my only option to improve my function and aesthetics?

As far as non surgical approaches.. I don't have any SARPE providers where i'm from.. MSE,EASE, etc... and from my understanding they only expand the upper jaw which is less of a concern in my case? Also, after doing some reading, seems like expanding has a tendency to expand in a asymmetrical way, which in my case is something that I should be careful about.

I'm willing to visit the top surgeons (Raffaini and the likes) if there is any reason to, and like I said, I just don't understand what i'm working with exactly.

As far as the TMJ is concerned.. the doctor went through the images briefly right after the scan and said that they looked alright. I also underwent an MRI but at the time I couldn't open my mouth very much at all, so trying to figure out if the joint was out of place during opening because I could barely open the mouth.

[GJ]

Sometimes the joint won't open wide just due to overuse, inflammation in that fossa/socket. If you're getting a lot of records and having clicking while eating, both of those could probably cause that.

You probably won't find anyone willing to widen your lower pallet. That puts torque on the condyles, and it's usually only done in kids who have disfiguration or genetic conditions that warrant it. Too risky here. Your upper looked pretty narrow, too, though, and that can probably be fixed via the 3-piece Lefort (segmentation of the upper jaw, which is very different than a Lefort 3). But the risk of that procedure is lack of blood flow to the bone and the maxilla dies. I'd be really on alert about that with your EDS. I've actually seen it happen in one girl who had EDS or something similar to it, and it was awful.

I'd tread lightly with this. I'd explore all non-surgical options in depth. I'd find the reason for the TMJ. Maybe you just have to live with it? If it's just clicking a bit but stable that might not be the end of the world.

So I'd go this route. You can do whatever you want of course, but: find the cause of the tmj, find if it is stable or if treatment is actually necessary, explore non surgical options. I don't see anything that stands out that definitely warrants surgery. Maybe Kavan will chime in, but I'd go no surgery unless you find a good reason to do it (especially with EDS), and I don't see that.

[Dom12]

Thank you for the response. I appreciate the help.

[kavan]

You have a double problem set of EDS and TMJ. So I think you would have to consult with a few surgeons to explore candidacy for surgery.

[Dom12]

You have a double problem set of EDS and TMJ. So I think you would have to consult with a few surgeons to explore candidacy for surgery.

Yes, I understand.

IS it possible however to get a professional opinion from you about my structure regardless of the fact? I have been reading your responses and they are extremely helpful and informative. I'll know better what to do then.

[kavan]

Yes, I understand.

IS it possible however to get a professional opinion from you about my structure regardless of the fact? I have been reading your responses and they are extremely helpful and informative. I'll know better what to do then.

Declined

Reason:

1: Faulty assumption that candidacy for maxfax surgery can be determined on this board and so determined in light of med issues cited and in the ABSENCE of any information that would suggest the OP has received some type of clearance for the surgery from a maxfax SURGEON who would be OK with performing it.

2: Any structural advice I would give to someone implicitly assumes the person has a structure where the bones can  be cut into and rearranged. That can't be assumed by ME in light of on going medical issues cited here.

3: I think you look good. So even if you didn't have the med issues, I wouldn't be picking apart your face in search of structural issues in an attempt to encourage surgery in pursuit of an 'ideal' that goes beyond 'good'.