Palate expander/TMJ. Need advice!!

[Rocks58]

Hi all...I'm new here
This might be a little long but here goes...any advice or similar stories would be appreciated.....

So for the last month I've been pretty anxious and sad and frustrated. I've had TMJ for a while now, but it was a relatively minor case compared to what is happening now. I would get these random instances of extreme ear pain on my left side. Was seen by an ENT and told I have TMJ after he looked in my mouth. Apparently I used to chew my cheeks a lot. This wasn't a very thorough diagnosis so I still have no idea what was really going on to cause all that. He just said avoid certain foods and sent me on my way. That was maybe a year/year and a half ago.

About a month ago I had a root canal and was held open for way too long. Had the expected pain/difficulty chewing for almost a week and then they put the permanent crown on me.
The day after everything was so awful. For a week I was bedridden with ice packs and meds. My TMJ symptoms had multiplied.
Thankfully, since that horrible week, I have improved slowly but steadily. I can now drive, do some chores, and in general be a human being.

But some core symptoms still stubbornly remain:
I'm on a liquid/soft diet. Just recently graduated to things like eggs.
Clicking sounds on both sides of jaw joints when I talk for too long, but not when I eat.
Chewing is awkward and kind of tiring but not painful. Everything just feels like it's in the wrong place.
My lower jaw is now deviated slightly to the left, which means my tongue gets scraped by my upper teeth on the left side.
Ear aches/pain, both sides: in front of my ears, behind, and up along the cartilage.
Neck/shoulder aches and pain.
Temple and base of the neck aches.
I typically have to sleep in a slightly sitting up position, if I lay flat my jaw sinks backward and causes ear pain.

So while I am now capable of being more active, I'm still not a functioning adult. I am constantly worried about setting off an ear ache, and almost constantly anxious about this whole situation and how I will go about treating it properly.

I've seen at least 3 regular doctors and 2 oral/maxillofacial doctors. They are very eager to give me medication, but not to actually give me a thorough examination. The most they did was examine my mouth and take a panoramic X-ray, which isn't the best way to check on the status of the joints. I've been told to observe conservative treatments (hot and cold packs/jaw rest/massage/MEDS). I have another appointment in late September, so basically they want me on this medication 24/7 for 2 months. This concerns me. Why is there no worry that I'll develop an ulcer or GI issues? It scares the **** out of me to be on this much medication for so long.

If by the time of my next appointment I'm not "better," they mentioned prescribing a mouth guard. If anyone has TMJ and has done their research like I have, you know that mouth guards are used to protect the teeth from the effects of severe nighttime grinding. I don't believe I have this, but even if I was clenching a little in my sleep, this would still do nothing to address the root problem, it would attempt to mask the symptoms and might even make me worse if it is not what my jaw requires to stabilize. They didn't even examine me to determine if I'm a teeth grinder or not!!!

I've also seen 3 TMJ "specialists" for consults. The first two were quite flashy. They were "specialists" but also cosmetic dentists. I don't think I'll be visiting this dentist combo again. The third one however I got a much better vibe from. She doesn't claim to be a "specialist," she is a general dentist who has committed a lot of time and education post grad to focus on TMJ and sleep apnea, and utilizes orthotic devices and functional orthodontics in her treatments.

She was also much more thorough in her exams. She looked at my mouth, palpated my face/jaw/neck, took pictures, and did an iCAT scan.
According to the scan and what she explained to me, my jaw is too far back and is impinging on major blood supply. It is also affecting the position of the first 2 discs in my cervical spine, which is affecting my airway.
(According to boyfriend and friends, I snore occasionally and even stop breathing randomly in the middle of the night.) I also have a slightly deviated septum.
My condyles are also too close to my ear canals (worse on the left), and they are starting to flatten out (also worse on the left).
So far I'm not sure about the status of my discs, I don't remember her mentioning them, and I'm not sure how she goes about determining that, but I have a follow up with her in a week, so I'm going prepped with lots of questions.

She did outline a treatment plan for me based on this consultation, and that's where my concern/questions come in.

She recommended:
Bottom 24/7 daytime orthotic to realign my jaw into optimal position, more forward, with weekly and then monthly adjustments.
Bottom nighttime orthotic to keep my jaw from sliding backwards when I sleep.
An upper palate expander to address my cross bite.
Then after relief and optimal jaw position has been attained, braces to keep everything in that position.
Then a retainer for the rest of my life to maintain that position, worn at night.

The retainer for the rest of my life doesn't bother me if it fixes the problem. Regular people who go through braces have to do that anyway.

The palate expander concerns me a little. I know it can be successful in adults if taken slowly and watched carefully by the doctor, but my issue is that I'm not sure it's necessary.
I honestly can't recall if I already had the cross bite before this root canal drama happened or not. Isn't it possible that my jaw muscles were hyper extended and then contracted, affecting the position of my jaw?
But I also have had a previous experience with braces as an adult. The orthodontist was not great about keeping appointments, and then I wasn't great about wearing my retainer and eventually stopped using it all together. Is it possible I developed a cross bite because I neglected my retainer and just didn't notice it because it didn't affect my jaw function at the time?

I just remember that right after the root canal the jaw deviation was more noticeable, and with time it has settled down some and is now just a slight cross bite. So I guess it could be a combination of the two? Idk.
I just also do not remember my tongue feeling this crowded and roughed up by my upper teeth. It wasn't an issue before the root canal.

So I'm questioning whether the palate expander is really necessary and whether it wouldn't put more stress on my TMJ's?

Has anyone anywhere been through anything similar to this?
Has anyone as an adult (I am 26) used a palate expander? Maybe as a treatment plan for TMJ?

Just looking for second and third and sixth opinions on this. Treatment for TMJ is a long term commitment and choosing the right doctor is unfortunately a very difficult and stressful and time/money consuming process.

Any help/advice would be very very appreciated!!!

[Prometheus]

Hi Rocks58, Your TMJ problems sound an awful lot like mine. I have a unilateral cross bite that caused my jaw to tilt. It was merely annoying until I turned 58 and then I developed severe pain in my TMJs, and ringing in my ears. I did not understand what was going on until an ortho who specializes in TMJD told me the inflammation from my arthritic TMJ effects my inner ear, hence the tinnitus. It was so bad I could not hear properly. I ended up with a bite splint for 7 months and then braces to fix the cross bite. The doc did not want to use an expander on an old guy, so she is doing it with rectangular NiTi wires and cross bite elastics. After nearly two years the pain is gone and the ringing has diminished somewhat. X-rays showed a crushed out condylar disk and the condyle rubbing bone on bone. Boy did that hurt, I didn't want to chew or talk for months. The joints look better now, but I probably have another 1.5-2 years of braces until I'm done. I had been to a number of docs along the way who told me I didn't need to bother with any fixes unless it hurt. It didn't.... until it did! I wish I was I knew what I was in for because I would have done something about my bad bite a long time ago. I have to say I'm very sympathetic, the pain was just insane, but it gets better. Whether you fix your cross bite with an expander or with wires/elastics is really up to the doc and you. The expander will be a faster fix, but I understand they are quite annoying. The braces/elastics are not so bad, I'm completely used to them. Good luck making a decision on what to do, I'm sure it can be fixed by a skilled ortho. -P

[Rocks58]

Hi Prometheus!
Thank you so much for your reply, it's comforting to know I'm not alone.
I'm so glad you found a treatment that works for you and that your symptoms are so much better, that's amazing.

Yeah I plan to ask my doctor what her opinion is on my cross bite, but it makes more sense to me that maybe I had it for a while after neglecting my retainer and just didn't notice it until after the root canal drama.

I'm going to ask her if my scans indicate how long I've had the cross bite or the condylar issues.

I would think I'd had to have had the jaw misalignment issue for a while because of the previous ear issues and the current flatness of my condyles. They had to have been rubbing against something for a while to get to this point I think. It's not severe, but pretty evident still.

So I'm going to ask her for confirmation and hopefully she can shed some light on how this stuff happens and how long it has been happening to me.

At first I was terrified about the expander suggestion. I didn't even know what that was, I had to research it. And then I read that it's mainly used in children and teenagers because by the age of 17/18 typically your palate has fused and using an expander on an adult is much more difficult or not recommended.

However, she seems to have a good track record with it because she takes it very slowly. She's used it on people older than me. I also remember her saying that for me in particular it was a good option, so maybe she saw something that indicated I could handle it. Or maybe I just don't require that much movement anyway, so it'll be easier.

I won't know until I ask next week :P lol I just hate not knowing stuff and waiting to ask my questions. (I'm quite impatient and anxious by nature unfortunately...haha)

If you don't mind my asking, what kind of bite splint were you given?

Thank again for the reply!

[Prometheus]

Hi Rocks58, The bite splint was like a big Essix retainer, much thicker, but similar. I don't know of a specific name for it. It was only on the top. It was so thick I had a hard time talking with it and was supposed to wear it 24/7, which I did. The biting surfaces were perfectly smooth preventing my upper and lower teeth from meshing. This allowed my jaw to slide back and forth and eventually establish a natural, comfortable position. Without the bite splint my cross bite would "force" my jaw sideways and put strain on my TMJs. My ortho told me it would take 2 months for me to get some relief from the pain. It actually took 7 months and even then it was still sore. I was not really pain free until ~1 year into the braces. -P

[Rocks58]

Hi again!
Thanks again for the reply!!

I had a few more questions if that's ok:

How did your dentist go about making your splint? Like what tests/measurements/scans were done to make sure it was personalized for your needs and that it was successfully moving you into the right jaw alignment?

If you're comfortable relating this info, what kind of dentist are you seeing? Functional jaw ortho? General dentist with functional jaw ortho experience? TMD specialist? A combo of all these?
And I'm not sure if it's allowed, but could I have their name if possible? You seem to be having good success.

And finally, what exactly is a NiTi? I will google it, but what was your experience with it?

THANK YOU!

[sirwired]

You also might want to consult with one or more board-certified orthodontists; it appears so far you've only been talking to various species of general dentists.

And the plan of two months of NSAIDs is not a bad one; you are unlikely to develop GI problems after such a short span of time, and many self-resolving joint issues just take that amount of time to heal. GI problems occur when they are taken for a VERY long time; a couple of months should be no big deal.

[Prometheus]

Hi Rocks58,

To Answer your questions:

How did your dentist go about making your splint? She made it in a lab in her office.

Like what tests/measurements/scans were done to make sure it was personalized for your needs and that it was successfully moving you into the right jaw alignment? She uses a cone beam CT scanner to evaluate the TMJs, teeth, roots, etc., etc. Cone beam CT scanners are common in most practices these days. I've had enough x-rays from this thing that I likely glow in the dark now

If you're comfortable relating this info, what kind of dentist are you seeing? Functional jaw ortho? General dentist with functional jaw ortho experience? TMD specialist? A combo of all these? She is a board certified orthodontist with an additional two years residency in a teaching hospital working on jaw problems. I strongly second what SirWired said in his post, most general dentists have very little understanding of jaw joint biomechanics. If you are in a lot of pain, see an expert.

And I'm not sure if it's allowed, but could I have their name if possible? You seem to be having good success. PM me and I'll send you a link to her office website.

And finally, what exactly is a NiTi? I will google it, but what was your experience with it? NiTi is short for Nickel-Titanium, a metal alloy that is soft at low temperature and very stiff at body temperature, like that found in your mouth. It is sometimes referred to as "memory wire", it is used in most ortho treatments these days.

-P

[Rocks58]

Prometheus:

I can't seem to PM you, I am a new member, maybe I am not allowed to yet?
Or maybe I just don't know how to? What can I do?

I am doing my due diligence and seeing as many people as possible. I want a hardcore definitive diagnosis before I attempt ANY kind of treatment.
I plan to request a TMJ MRI soon to confirm what is happening with my muscles and discs. I'm also going to send my iCAT scan in to a radiologist to get a report on it.

I saw another specialist and he hypothesized that based on my limited mouth opening, and the lack of clicking when he used a sound Doppler on my joints, my left disc may be anteriorly displaced with a possibility of no reduction (locked ). But he said that if with exercises I'm able to increase my oral opening, this would be a good sign.
And I can! With the jaw exercises, so far I have been able to reach 38mm, where before it was at about 25mm. So that gives me some hope.

Making a decision in what treatment to go with is one of the scariest things I've gone through. It's so easy to get over-treated or mis-treated by the wrong doctor.

[Woohoo068]

Do you know what type of palate expander you will be having . ..

I'm I'm the uk and will be starting treatment next month I hope for he same thing as you it seems

[Woohoo068]

Please could you pm me the name of who you are seeing? Thank you

[Suem2924]

Hi there, I know this post was a year ago but I was wondering if you went ahead with the treatment as I’ve just been given the same treatment plan? I’m very nervous as don’t know anyone that’s had it done and don’t want to make my symptoms worse, my story sounds similar to yours. If you did go ahead with it has it solved your TMJ issues?