I'm 22. I've had arthritis (juvenile rheumatoid) all over my body since I was about 7, including in my jaw (TMJ) joints. While the treatments in the rest of my body were enough to prevent any serious damage, they didn't work in my TMJs. After years on waiting lists, I had a bilateral total joint replacement, where my TMJs were removed and replaced with custom modelled joints made from titanium and polyurethane. Edit to add that I also got a sliding genioplasty to pull my chin forward a bit, and then they removed a wisdom tooth. Ha.

Trying to help speed up time passing while I wait for swelling/pain to go away and figured with all the people who have TMJ, this might be of some interest.

Proof has one of the incisions and my sick new haircut. Not sure where else to start, but AMA!

Edit: wow, slept for a few hours and woke up to lots of questions! Will do my best to answer these :)

Edit 2: going to try and get some more sleep but will come back to this in the morning if anyone has more questions. Thanks for this reddit, this has been a lot of fun!

Comments: 458 • Responses: 53  • Date: 

Immortal_Azrael631 karma

So are you like Jaws from James Bond now? If not, please lie.

MediocreLifeguard500 karma

Yes. Also, his haircut.

BasilBaker93 karma

Can you chomp a billiard ball? I mean, I guess we all can, but can you get away with it?

poorlydisguisedfish12 karma

We have to see a full-face pic to answer this.

MediocreLifeguard14 karma

Take my word for it - I've been promised today is the worst day for swelling and oh my god I hope that's true my cheeks feel like they're gonna explode

Riverthedog368 karma

My daughter has TMJ issues. Arthritis, with difficulty opening and closing her jaw and it getting stuck. She sometimes has to move her jaw with her hand to to make her mouth close. Also, sometimes she is in a lot of pain. I can't see my daughter having that type of surgery. She hates doctors. Amazing that this procedure is available and I must add you are are very brave . person. I guess I am curious as what made you decide to have this surgery? Did you have other options available?

MediocreLifeguard328 karma

I'm sorry to hear that - arthritis is no fun and neither is pain. How old is your daughter? It was something that we tried treating all through my childhood/teenage years and as the damage got worse this became the only option aside from just living with it.

My pain was pretty constant and getting worse, and I'm only 22. We could have scoped the joints - i.e. gone in and scraped off the calcification, especially on the left, which wasn't as bad as the right, but they'd declined so much in the three years since we started it seemed like the replacement surgery would be the end option anyway. I figured with the trajectory and success rate of the surgery, I had very little to lose. In terms of your life, 6-8 weeks of intense recovery isn't a lot, and even 6 months is minimal. It's been something on the horizon for a really long time (~3 years of waiting lists) and when the time finally came, I wasn't going to change my mind. This has been a very long week but I'm glad to have the actual procedure over with.

Do you see a rheumatologist? That was who referred me to my maxillofacial surgeon - if it's an option, I'd recommend at least investigating. Hoping it's all uphill from here.

powabiatch45 karma

How is the pain now? I had crazy TMJ problems 6 years ago, but was fortunate I had no pain. I just couldn’t open my mouth more than an inch! It eventually healed on its own a few years later but I’m still in some small danger of one day shattering my condyle if I make a wrong move.

I saw a couple insane/scammy TMJ “specialists” who wanted to charge me thousands (not covered by insurance) on semi-permanent guards on my teeth to change my jaw alignment, plus some crazy stuff about it having to do with my posture. Luckily I read that none of it had any scientific merit and could have even fucked up my jaw even more.

Anyway, good to know there is some legit surgery that can help, just in case!

MediocreLifeguard81 karma

I'm 4-days post op so the pain isn't great. The joint, however, moves like a dream. By the time I'm all the way recovered I'm expecting the majority of the pain to be gone, at least over time with the help of physio and reworking the musculature to accommodate for joints that aren't damaged to all hell.

theKurdledNoodle110 karma

I may have to get the same surgery, so I was wondering: Did the surgery affect your jawline at all? Did it get better or worse?

MediocreLifeguard242 karma

Hey! Sorry to hear you need it too - both sides?

The TMJ replacement doesn't affect your jawline at all, but I got a sliding genioplasty too (apparently quite a common addition to the procedure) to correct the fact that my chin had receded a bit. That will improve it - give me a stronger jawline and more defined chin, stronger profile, etc.

They also took out my only wisdom tooth while they were in there. I'm lucky enough to be in Canada, so none of this cost anything else and was all just added to the procedure because it made sense. Are you somewhere with a more supportive healthcare system?

is_it_local32 karma

Oh, that’s wonderful! You are so fortunate to have access to such amazing healthcare. I am in the States and one of my loved ones with severely deforming rheumatoid arthritis is struggling to find a doctor that knows what to do with her. I am glad you were able to get the surgery that you need!

MediocreLifeguard17 karma

Thank you! I am really grateful to live where I do. RA is scary and I'd be a lot worse off if not for the care. See if you can find a rheumatologist - it seems like many insurers do cover that and it's absolutely something that affects quality of life. Hoping you all the best and that you can find care very soon!!

goatmasterXX8 karma

Chiming in on having childhood ra in the states, my wife had her first hip replacement this year at 31. The cost was 89,000

MediocreLifeguard2 karma

That's insane to me. Hope your wife's recovery is going well and she's living with less pain - and do I ever hope that procedure was covered by insurance.

crimsonnate13 karma

I’m going to end up with the same surgeries you’ve had. I was told the jaw slide basically gives you a new face outline and you can feel like you look very different. Any insight into this?

May your nights be clench free and your mornings migraine-less.

MediocreLifeguard10 karma

Swelling makes it hard to tell but my profile is definitely stronger. From the front, I think I'll look almost the same, maybe a little more defined through the chin. I'm okay with both of these things, they've always been points of insecurity for me. I think if you're thorough pre-op with your doc, you'll be happy once you get used to it. It seems like most of the people doing the procedure are equally pleased with the aesthetic and functional results.

Thank you! May yours soon be the same! Feel free to message if you want to talk more - when will your procedure happen?

crimsonnate11 karma

I’m not in Canada so mine will be as soon as I can come up with 7-fucking-thousand dollars.

Don’t feel obliged to answer any of this but, yeah, I have all kinds of questions (never met anyone IRL that has severe TMJD):

•Did a dr or surgeon ever do some weird test where they connect a machine and computer to your head to see where your bite-placement should actually be? A previous dr was going to charge me some insane amount of money (thousands) for that test and I never went back to him.

•When I was 14, I went to a dentist and orthopedic surgeon about headaches and jaw popping. I was told that it’s TMJ, it’s something 14-year-olds get and it will clear itself up. That was 24 years ago. Anything like that happen with anyone else? Wtf, Drs!? Fucked my whole life up with that mis-Information.

•You ever wear a splint? Doc told me I have to wear mine 24hrs a day/7 days a week. I have severe overbite, hence the jaw misalignment, so this splint was huge in my mouth to cover all the bases. My dog ate it like 4 days later. $900 wasted. I would never have worn it regardless of how much I practiced saying the names of states starting with the letter M.

•I’m several drinks in and hot about this shit now. How about the fuckin’ “oh, that’s dental insurance” then to be told “no, it’s a health issue so it’s health insurance” then “it’s health but in a dental way so call them back and convince them to pay it” and back and forth and back forth? Anyone?

•this sounds like BS, you ever heard it: I had one surgeon tell me that you can tell the severity of your TMJ based on how late your jaw pops when opening your mouth. He said mine was the worst he had ever seen in 35 years. #SoProud

MediocreLifeguard3 karma

Ah, chump change. Hope you can get something figured out mate.

Re your questions in order: no weird test, what the hell doc - ugh, the misinformation and misdiagnosis sucks, I slept with a splint and it helped a bit with pain, and YES the insurance/coverage runaround happened here too. Three different docs and we couldn't figure out whether it was dental or medical or orthodontic. Ended up being a combination of all three... Super weird.

I feel you on the severity thing, also #SoProud. My favourite quote from the whole process was when docs looked at initial MRIs - "that's not a damaged joint, that's a destroyed joint." I felt like I was all of a sudden on an HBO special.

jocelynlt4 karma

Totally off topic, what’s with all the extra. /- added)- characters/- you use?

MediocreLifeguard7 karma

Unless you're seeing something I'm not, just punctuation and the way I talk, I guess.

spewbert103 karma

So are you going to set off metal detectors now with your cool partially-titanium jaw?

MediocreLifeguard144 karma

I was actually flying last weekend. I can't wait to test this. From research it seems like some joint implants set them off, and the company that made my TMJs also makes hip and knee replacements which do. Stay tuned haha.

yyyyyyyvgbbghnmklkib63 karma

So can you crack walnuts like a vice grip or is it just a regular strength jaw?

MediocreLifeguard78 karma

Haha it'll just be regular strength, because the muscles are still mine. Shouldn't crackmy jaw open if I tried to open a pistachio or something, and lockjaw won't be an issue anymore...

Thor426918 karma


One day we shall rise...

Seriously (but only kinda) though, any muscle augmentation planned if the tech becomes available?

MediocreLifeguard32 karma

Hahaha I'm like half the characters in Archer now.

Nothing planned, no. Nerve damage is a common complication and I do have some - I can't move my right eyebrow right now. About half the people coming out of surgery can't close one or both of their eyes, and I'm lucky because that didn't happen. I know my surgeon's "got a guy" were that a problem.

biriyani_critic14 karma

Bah! Moving eyebrows was always overrated!

I'd consider a little loss of emoting capabilities a fair trade If you can tear into massive chunks of meat without getting lockjaw..

MediocreLifeguard12 karma

Right! Priorities...

TheRealAspano7 karma

Wow, my son is experiencing the pain, and it locks up on him once in a while. The dentist gave him a night guard, but he won’t use it. Question for you: was this covered under OHIP? The folks at the Sunnybrook clinic where we went said they didn’t think OHIP covered...

run__rabbit_run10 karma

Hi there! Not OP, but just had double jaw surgery + genio and can tell you that it's very, very uncommon for most U.S. insurance companies to cover any kind of orthognathic surgery - especially when the reason is TMJ.

My case was an exception as the position of my jaws was causing severe sleep apnea. This is one of the very few exceptions they make for covering this procedure.

I will note that I also have TMJ (which was acutally caused by the sleep apnea), which could be your son's situaiton as well. Couldn't hurt to have a sleep study done to see whether that's the case - it could help him get the procedure covered.

MediocreLifeguard5 karma

I know it's a really expensive procedure under the US system too. To add to this, even for me, the procedure itself was covered under Ontario healthcare because that was medical in nature, but everything leading up to/following it hasn't been. I'm not sure if a US insurer would make the same distinction, but even in Ontario out of pocket expenses were higher than they'd be for most medical stuff.

MediocreLifeguard9 karma

The procedure itself, which was medical and for me happened at Mt. Sinai, was covered under OHIP. All the consultations, pre-op, and post-ops aren't because they're considered orthodontic, which means the cost to me was just over $6000.

I might have suggestions on who to try and see. I know the only Ontario hospitals that do the surgery are Mt Sinai and Credit Valley, and I think there are two main surgeons. Feel free to DM me.

Any reason on him not using the night guard? I started with one while I was awaiting surgery and found on a day to day pain level it made a difference.

drjenkstah2 karma

I'm glad I wasn't the only person thinking something related to this. I was wondering if the power level of the bionic jaw was over 9000.

MediocreLifeguard9 karma

Power level of bionic jaw: 9001.

Power level of human muscles: about 6.

sojayn47 karma

Thanks for doing an ama! How have you gone with eating? Did you have an feeding tube for a while or iv therapy or did you just start using it? Speedy recovery anyways :)

MediocreLifeguard103 karma

Thanks for asking! I'm on clear fluids until Tuesday afternoon and I drink 'em through a syringe. Next steps are shakes and smoothies until my jaw gets stronger. I'm already dreaming about food haha.

Davecasa56 karma

Slightly overcooked Kraft dinner can be slurped down with no chewing. Highly recommend once you get to the smoothie stage.

ragtime_sam46 karma

You Canadians and your kraft dinner

MediocreLifeguard20 karma

I hear you Americans don't add ketchup?!!?!

AnfoDao19 karma

No.. No we don't but I've always wondered? Do you put it on top like sauce, or do you have a pile on the side that you dip in, or is it mixed throughout.

Sincerely, a confused yet intrigued American

MediocreLifeguard12 karma

I'm sure others have different techniques.

But you mix it throughout! Stir it right in there and you gotta try it!

MediocreLifeguard17 karma

10/10 have tried this in preparation and will do again. Thanks mate!!

Melificient4 karma

I had similar surgery 22 years ago, and my mother cooked a roast and pureed everything with a touch of extra water. It was INCREDIBLE.

Oh yeah how was your bruising? I had bruising all the way down my chest. It was crazy ha ha.

MediocreLifeguard6 karma

Really? A meat smoothie? If your username checks out I gotta say I'm a bit skeptical.

Bruising is just getting started. It's running down behind my ear and onto my shoulder - will update with a pic once it really gets going. I'm kind of excited for it haha.

Mythril_Zombie-9 karma

So no fresh, crisp apples? Thick juicy steaks? No bacon cheeseburgers and French fries? Roasted peanuts or buttery popcorn? They must make exceptions for a chocolaty Snickers bar, right?

MediocreLifeguard2 karma

This seems unusually cruel.

jurvekthebosmer46 karma

So.... What do your teeth look like now?

MediocreLifeguard97 karma

Right now, like a bloody metallic elastic mess. See: arch bars. The inside of my mouth hurts one hell of a lot more than my jaw does.

But I'm less than a week post-op, so they should look normal, once the swelling in my face/lips goes down enough for anyone to actually see anything in there.

jellytin834 karma

Guh! I made the mistake of googling 'arch bars'. I'm so sorry! They look like a medieval torture device - I never knew they were a thing.

I have TMJ issues as well, but are so far they're only functional (I don't have any pain or discomfort). My ortho said jaw surgery might be something we visit as an option down the road, but I'm pretty hesitant.

I wish you a speedy recovery and pain-free future! Thanks for sharing your experience. :)

MediocreLifeguard21 karma

Haha thanks. The thought of these as some kinda cruel/unusual punishment is somehow comforting. Can't wait for these things to come off.

All the best to you too! Hoping your stuff stays manageable and pain free!

Jaykuk16 karma

Yeah did they attach new ‘bone’ to your ligaments/muscles? Or is there some kind of mechanism that you control that opens and shuts your jaw.

MediocreLifeguard37 karma

Hey! That's exactly what they did. They have to go through some major nerve/muscle bands, so a big part of the recovery involves getting everything working properly again. Once I'm all the way recovered, the joint should function "normally" and move like a jaw is supposed to. Before the surgery I could only open my mouth about 13mm (normal is between 30 and 40mm) and it'd hurt, crack, and click every time I opened my mouth to eat.

Link to a very NSFW/NSFL video of the actual procedure, if you've got more of a stomach than I do: https://www.youtube.com/watch?v=ypHbIT7LZAU.

Jaykuk11 karma

Hard pass.

MediocreLifeguard10 karma

Good call. Took me too long to remember there was a reason I didn't watch that before the surgery.

bowyer-betty9 karma

It's always weird seeing doctors/surgeons doing their thing. He really just manhandles that person's face, pushing tissue around and prying bone loose and whatnot. He obviously knows what he's doing, but just the casual way he goes about it is crazy. Like removing parts of people and going at someone's skeleton with a screwdriver (I really figured that there would be a more...sophisticated way of screwing in fancy prosthetic bones) is just another Monday, which I guess it really is for him.

MediocreLifeguard9 karma

Speaking of just another Monday, everyone chats about the weather and sports and weekend plans when they're in the OR too. I found that to be the most unnerving thing waiting for the anaesthetic to kick in - though I guess it'd be worse if the surgeons were as scared as their patients.

Crazy how much your body can take though. I have trouble computing what's actually going on under those incisions right now - like my brain just can't quite grasp it.

TellMeToMyCrotch7 karma

This video was fascinating. The addition of fat at the end was interesting.

MediocreLifeguard7 karma

I'm not squeamish but watching him poke the scalpel up one incision and seeing it in the other makes me want to vom. The fat packing thing was actually not something they did for me - I asked my surgeon and he said because I hadn't had any prior jaw surgeries, I'd be okay without it. Tons of cool surgery vids online though - totally a rabbit hole to lose yourself in if it doesn't make you queasy.

doomgiver982 karma

TBH if I was undergoing some traumatic surgery I would want to have their full attention rather than filming.

MediocreLifeguard7 karma

My hospital is actually a teaching hospital and of all the consent forms I had to sign, the one opting in to audio/video recording and using me to teach was the most bizarre. That said, I'm glad to be helping more people have access to the surgery, and for the few who already know how to do it, it's just another day in the fluorescent, sterilized office...

Paragraph_Appraiser3 karma

If you allow them to do that do you get a discount on the surgery? That would be sweet.

MediocreLifeguard3 karma

I'm in Canada so it's all covered under OHIP. If you're in the States haha, why not hit up your hospital and ask?

ax0r12 karma

I'm a radiologist.
Have you got any images that you can share (de-identified of course). Xrays/CT/MRI?
Pre and post op would both be interesting.

MediocreLifeguard6 karma

Oh super good question! I have two very poor quality x-ray photo (taken on my phone of a computer screen) where you can see some of the effects of the damage. My whole jaw is pitched and pivoted sideways because of ankylosis and growing to accommodate for damage in the joints. I have a post op on Tuesday and can try to get better ones (including a CT scan) then if you're curious.


megmegshell10 karma

Hey! I was diagnosed with JRA (now I guess JIA) when I was 18 months old, and I'm 22 as well. It's really rare to find someone similar in age who has also had it since they were a kid. I'd love to hear about some of the ways you've found to manage your day to day pain/ increase general comfort.

I've found that after so long with it, I do things subconsciously throughout the day that seem strange to other people - but to me are normal ways to make my life easier. Growing up with chronic pain made it easier to accept the impact of knowing the pain will be there forever. You get a lot of the anger and frustration out of the way when you're younger so you dont let it eat you up like most people who are diagnosed later in life. I feel fortunate to have that sort of experience and insight. I wonder if you feel the same.

I've spent the past couple years working on a document (I jokingly call it the "Veterens guide to chronic pain management"), that combines all the small things that a person with pain or person living with someone in pain can do to make life a little easier. I have a lot of family and friends who have unfortunately been recently diagnosed with one form of chronic pain or another, and I hope that the things I'm documenting will ease the burden that comes with those life changing situations.

For example, all the furniture I own is either on wheels or built for easy movement. Additionally, I have a heated blanket in every room in my house, and one for the car. I get my shoes specifically customized for my feet so I can wear heels to work without spending the day feeling miserable. And the few times I've bought a car, I spent 3 days testing out every car (does it hurt to climb into, will it if I have a flair up, how does the steering wheel feel, I always buy cars with the camera on the back...etc). Sorry if I'm rambling...

Do you have any unique "home remedies" you use? Or special tricks you've learned throughout the years to make your life easier?

(Congrats on the first step in becoming a bionic man!)

MediocreLifeguard7 karma

Hey! It seems like you've made great steps in terms of making peace with it. Nice to be in the same boat as someone too.

I really like your perspective on chronic pain, and I think mine is similar. I definitely do things to accommodate, but I've been lucky - with the exception of my jaw and limited ranges of motion in several of my joints, chronic pain in the rest of my body has been kept to a minimum. I've always been athletic and there are very clear limitations emerging now on what I can and cannot do, and those are increasing - it's something to be pragmatic about though, not some missed opportunity. I'm lucky for what I can do, and for what I've been able to in the past.

I have orthotics in most of my shoes because I live in the city, love walking, and have a lot of ankle trouble. Sometimes it feels silly wearing shoes that aren't those white converse everyone has on, but it keeps me mobile and functional. I think there are tons of similar little adjustments - "how will this affect me tomorrow? do I need to take an extra ibuprofen to deal with aching? will this cause a flair?" - that I make too.

In terms of special tricks, the big one for me is just understanding that to a lot of people arthritis is something you get when you're old. It's not something people understand and the severity of it isn't something people see. Like you, the issues have been mostly mental, and wrapping my head around the fact that other people can't always grasp has been half the battle.

Also, I don't need to run a marathon to succeed as a person.

And I'm female, but thank you! Here's to your pain management and very good mindset about all this.

thevenomousmuse8 karma

This is so interesting (also sounds very painful both from juvenile arthritis and post-op recovery!). You said that your jaw will function like normal, does that mean that you will regain full range of motion or is the joint too deformed from the arthritis or the new joint too unstable that you won't be able to open your mouth or move your jaw side to side as far as another person?

MediocreLifeguard12 karma

Hey, thanks for this question! As long as recovery goes like it's supposed to, the deformity and limited range of motion (which used to be there from all the arthritis damage) will be gone. I'll be able to open my mouth 2-3x as wide as I could before, it won't hurt, etc.

I've got elastics on my teeth right now keeping everything stable, but have an appointment on Tuesday where those will come off. They gave me a little rehab tool called a Therabite and I use that to stretch and strengthen the muscles, ´working up to full range of motion, which I've never had. I honestly can't wait.

run__rabbit_run5 karma

Hiya! Love from a fellow bionic jaw - I had double jaw surgery (bimaxillary advancement; Lefort 1 + BSSO) and a sliding genioplasty two weeks ago.

How's your nerve situation from the genio? I'm still mostly numb but finally felt some sensation after brushing a towel against it this morning. Shit feels real weird.

MediocreLifeguard6 karma

Wow, hi! You're a week ahead of me in terms of timing and I may DM you in a sec because we're in the same boat.

Nerves are weird here too. I'm only completely numb on the right side of my chin and by the incisions, but feeling in the rest of my face is different for sure. It's almost like I'm feeling through a baseball mitt? Can't tell you if that's the swelling or genio damage. According to one of the residents at the hospital that's normal... hella weird though. I did so much research on the TMJ component of the surgery I kind of ignored the genio. Everything I can find says the majority of the numbness goes away in 3-4 weeks, but lasting damage can take 6-12 months to repair fully.

rlbond864 karma

How durable is the new jaw? For example I have heard that people with knee replacements need new ones after 10-15 years.

MediocreLifeguard10 karma

Great question. IIRC, they've been putting these joints in and doing follow up studies for 20-30 years, so that's the data they're working with. The joints of the people who received some of the first seem to be in the same or nearly the same condition as when they were first installed, i.e. almost zero wear and tear. It seems like they're more durable than hips & knees.

Fingers crossed these will last a lifetime - though I'd be happy if I needed to get another set done after 30 or 40 years too.

Yossi253 karma

Did you have very bad tinnitus (ringing in ears) with tmj?

MediocreLifeguard4 karma

Hey! Answered this somewhere else but it wasn't bad for me. I know it can be a common side effect but tinnitus can be a symptom of so many things that a connection with TMJ doesn't always have an effect.

dinklebergs_revenge3 karma

Did you have problems with your jaw popping out/unhinging? Mine has for a while and I've been increasingly concerned...

Also, holy hell that sounds unpleasant.

MediocreLifeguard4 karma

Nothing unhinging, just really limited motion and tons of cracking/pain when I tried to push it. It'd ache all the time too. And then one very unpleasant experience involving an SO and a bit too much enthusiasm, haha. All should be fixed once the recovery is done!

PyroNinja742 karma

Wait, what? Gonna need to know the rest of the enthusiactis SO story plz...

MediocreLifeguard10 karma

Hahaha okay I'll try.

Because this has gotten worse over time, I've been able to give less and less head (and naturally have enjoyed it more). My partners have generally been understanding and don't ask or pressure me to try, but sometimes I want to return the favour/say fuck the arthritis/try anyway.

A few months ago, I'd been feeling really good for a few days and just insisted that we try. For once it was going okay - nothing too intense and really pushing the range of motion, but technically all good. Then we both get a little too into it, I'm on my knees kinda facing away/twisting back towards him and forgetting to protect the joint, and as he pushes forward something about the angle makes my jaw crack LOUD. Shooting pain all the way down my neck and back, jaw is stuck open, we stop, and I'm out of commission for like 15 minutes. It sucked. Even just kissing for the rest of the night was painful.

Honestly I'm glad I didn't bite down or something.

Imgurbannedme2 karma

Will you use your powers for good or evil?

MediocreLifeguard6 karma

I'm chaotic good.

HeadBrainiac2 karma

Why did you spend so long on a waiting list? What is the actual wait for?

MediocreLifeguard6 karma

I'm in Ontario, so all this was covered through OHIP. Lots of people have TMJ issues and there are like two surgeons in the province that do the surgery.

First waitlist was about a year for a consultation because of volume. It was determined right away that the surgery would be happening. My surgeon got into a motorcycle accident and broke his finger/hand in a bunch of places, so that pushed the next waitlist from 6 months to a year and a half. The last list was just the time it took to manufacture the joints and book the surgery.

I'm not sure what privatized healthcare is like in terms of speed but one thing I've learned from navigating the public system is that time is almost never on your side. Be proactive if the option's available.

ericjaywrites902 karma

My wife and I think our daughter may have juvenile arthritis. What sort of signs and symptoms did you or your family notice when they started?

MediocreLifeguard3 karma

Hi, thanks for asking this. I was diagnosed almost coincidentally and we got lucky.

I was stung in a finger joint by a hornet when I was 7. It started swelling and just didn't stop. We went to my GP, who just happened to be a rheumatology resident at Sick Kids Hospital in Toronto, and she diagnosed me that way.

My arthritis was sort of the product of an overactive immune system. I rarely got sick, but also, I'd hit something, the swelling would start, and very quickly it would turn into a flare. Sometimes they'd just trigger randomly. Generally, joints were stiff, range of motion was limited, and things were painful. The swelling wouldn't go down, or when it finally did, the joint was stiff, malformed, and sensitive.

I highly recommend taking her to a specialist if you can find one. JRA can do a lot of damage if not managed properly (which is effectively what happened in my jaw). See if you can get a diagnosis - might be better safe than sorry on this one. Good luck too!

Kreos6422 karma

Hi, I have bilateral TMJ as well. I'm 25 and working on figuring this all out. I know you may have stopped answering, but if anyone here in this thread can help me, I'd love you for it.

Although my...erm...dentist (orthodontic and jaw specialist...who happens to be a dentist too?) Said I don't have to think about it yet, I'm avoiding surgery because I heard that there's a risk to lose your hearing (partial or full). Is this true? Did anything happen to your hearing?

How long was the procedure?

What else did you try before surgery?

My TMJ is a sudden popping and a lot of soreness. I only had lockjaw twice, for maybe 30 seconds each time. Is this a sign I'm totally fucked?

I had my wisdom teeth removed and my other teeth properly filed to fit correctly after "resetting and relaxing the muscles" with a type of retainer that didn't let my teeth touch for a month.

People have weighed in on me in the past and said I should just get the surgery. Other people have said I should go to a chiropractor to have them beat the devil out of the tension in my shoulders and neck....I think they hope that the relaxed muscles will help alleviate symptoms? What say you?

MediocreLifeguard2 karma

Hey, will try my professional patient best.

Hearing issues are another potential complication, though a less complicated one, because they're working so close to the ear. I didn't have anything major happen there - during my stay in the hospital I met with the ENT (ear, nose, throat) team and they told me my right eardrum was inflamed, but no perforations or anything serious had occurred. I have drops and my hearing should go back to normal soon. It's a bit tunnelly right now.

I was under for 8 hours. It's a long procedure. I had some pretty serious nausea the first two days waiting for the anaesthetic to leave my body. Throat was stupid sore from the intubation (the thing they jam down your throat to keep your airways open) on day 1 & 2 but everyone's said the first week is the worst, and then it's all uphill.

I tried chiro and massage therapy and it did nothing. For me the damage was in the joints themselves, and the muscles had worked to accommodate but nothing would help but actually fixing the bone. I was a pretty extreme case though, and it's something to start with if you haven't yet. I slept with a splint and that helped too - has that started coming up in conversation yet?

SkyeEDEMT2 karma

How old were you when you first got diagnosed with the arthritis?

I don’t have arthritis, but I discovered I have TMJD when I yawned one day after class in 2016... and dislocated my fucking jaw.

MRI shows the joints are deteriorates on the left more than the right, and more anterior than they should be.

It’s been a couple years but my oral surgeon did say that I would probably need the joints replaced within 10 years. Every now and then I feel that clicking and I stop dead and think “oh. Oh no. Stop”

What was the kicker for you on actually getting it done? How many days post op are you?

MediocreLifeguard2 karma

Hey, thanks for the question.

I was diagnosed when I was 7 - got stung in the middle finger joint by a hornet and it just never stopped swelling. I've had JRA flares just about everywhere, and my jaw became a problem when I was 10 or 11. After a few cortisone injections (which worked in other places) with no improvement, it became the thing we'd get to later, with more pressing flares happening in my hips, knees, ankles, wrists.

My MRIs were the same for a while, but worse on the right. How old are you?

It took about three years from the time I was referred to my surgeon to actually having the procedure. At a year and a half, when I had my consultation, I had limited motion (opening 23mm) and pain some days at a 3/10 and others at like a 7/10. The decision was more or less made then, but we had to wait for a spot to open up. By the end of another year, the pain had become constant at a 5/10 or higher, ROM reduced to 18mm, and even the "good side" had deteriorated faster than we'd expected. Because of the rate of decay, getting the procedure had never really been a question for me.

I have to put a few things on pause with my life, but I figure better now than never. I'm only 4 days post op - trying to distract myself and find things to make the time pass. Even now with all the swelling and pain meds it feels about the same as it did pre-op. So no regrets here.

SkyeEDEMT2 karma

Wowza, you were very young. I’m sorry you’ve had to do that.

I’ve only had the one MRI done, at 18 about 3 weeks or so after it first happened. Then about 2 weeks after that was a consult with a TMJD specialist/surgeon.

Haven’t been back since. They had a bite guard made for me, which I used for a bit then stopped. I really should use that damn thing. Usually I have no symptoms, but when I’m really stressed or anxious I find myself clenching my jaw and then I have the clicks and sublaxations. Take a muscle relaxant and problem solved.

I wish I was in a country with a waiting list on triage. I’d have to pay for it practically completely out of pocket, so it’s a big decision. Guess I’ll just keep waiting until it gets worse.

MediocreLifeguard3 karma

I highly recommend the splint. I didn't realize how much it actually did help until I used it consecutively and then stopped for a while. When the pain gets to be something you're thinking about daily, go back. Use the splint as a precaution and here's hoping it doesn't get any worse!

TheMadInTheHat2 karma

Does it feel different to your partner when you give head?

MediocreLifeguard3 karma

Yep. Different in terms of "is possible" vs. "wasn't possible". I'm stoked.

Infectionitus1 karma

Are you taking any supplements? If your not taking any I think some of these might help.

Here's some good protein shakes that might make eating easier. Dymatize hydrolized whey protein birth day cake flavor, BSN syntha 6 strawberry or vanilla for meal replacement, optimum nutrition casein protein before bed. Also the packaged flavored oat meal can be mixed in with the shakes to make them more like a meal. I'd also reccomend multi vitamins and fish oil. Best of luck in your recovery.

MediocreLifeguard1 karma

Hey, thanks! I'm saving this because I'll be off clear fluids and quite literally starved for nutrition soon. The oatmeal is a great suggestion too.

ojmt9991 karma

You mention success rate of operation, what is it?

I have TMJ but nowhere near as bad as what you seem to have had. I’m 26 so would imagine that given another 10-15 years I might be in same boat.

MediocreLifeguard2 karma


As well, they have to go around a major nerve in your face, so the risk of complications is high. "Virtually everyone" comes out of the surgery with "weakness" in their face and in about 10% there is permanent nerve damage. Often people can't close their eyes or eye post-op. For me it's just some numbness and the total inability to move my right eyebrow. See: https://www.youtube.com/watch?v=6jkPpzXDNYU.

couchpotatoe1 karma

Do you have tinnitus, and if so, have they ever told you it was related to the TMJ problems?

MediocreLifeguard1 karma

Tinnitus hasn't been a huge issue for me. I've read it can be one of the less common side effects of TMJ issues, because so many of the muscles/ligaments in your ear and jaw are close together or connected somehow. Tinnitus can be a symptom of a ton of different things though!