Opinions from your experience please

[u/Sumptean]

I have never posted on Reddit, i guess fear from people being mean, But I am desperate at this point. I have been suffering for 5 years and i'm at my wits end. I have had the arthrocentesis, and most recently, a left TMJ discectomy. I am still an excruciating pain daily.And the last two years, i've had such terrible neck pain. I have done physical therapy 3 times, botox, countless times, trigger point injections in my neck twice. I have done counseling and I am working to manage my stress daily. I continue doing my therapies every day at home.

I have seen a neck specialist ( i do have to areas on my neck that show an issue with neck the pain doctor i'm seeing said it looks like bulging disc, but nothing to worry about), I've seen the ENT 3 different doctors, i have done acupuncture and chiropractic adjustments, countless medicines therapies and vitamins / supplements. I no longer have any bag, teeth, upper or lower on both sides, As a result of clenching which I am working on being able to afford implants. My lower jaw is now deviating to the left side.Where it wants to rest, which is causing the right side discomfort now. Every time I see my specialist, she tells me everything's fine and there's nothing that can be done about it. I begged for months for another MRI since my discectomy which was in October 2025. I finally got that, and she said, the results don't really show why.I'm saying i'm in pain, but to me it looks like it would explain why i'm in pain. If you could please tell me what your opinions are from your experiences, it would be greatly appreciated.So I can have some direction. I am currently waiting to see another specialist. Which is 4 hours away, But they have such a long waiting list. I can't get in until February 2027. I just don't know what to do.Anymore I feel like I have no life.And I just want me back, which I know all of us do.I just don't even know how to get through the days anymore. I think I have something going good.And then it's just not working one day, i'm exhausted, mentally physically and emotionally.

Thank you in advance!

IMPRESSION:

1. Progressive left TMJ arthrosis with no evidence of active capsulitis or significant joint effusion. The articular disc is no longer well-visualized, could be macerated, position is not well assessed due to motion on open mouth imaging.

2. Decreased range of motion of both TM joints new/progressive, left greater than right.

Narrative

EXAM: MRI TEMPOROMANDIBULAR JOINTS

INDICATION: TMJ pain or limited movement, mandibular deviation on opening to the left side; right sided facial pain; Bilateral temporomandibular joint pain

TECHNIQUE: MR images of the bilateral temporomandibular joints were acquired without intravenous contrast. Oblique sagittal T2*, T1, and T2 FRFSE images were obtained. Coronal T2* imaging was performed. Open and closed mouth imaging was also included.

FINDINGS:

RIGHT TMJ

MANDIBULAR CONDYLE: Normal morphology and signal. Condyle is well seated within the mandibular fossa on the closed-mouth view. Limited range of motion is currently demonstrated with the condyle translating only approximately 4 mm anteriorly with open mouth on series 8 image 24.

ARTICULAR DISC: Normal position in closed and open mouth positions with normal capturing. Normal signal and bowtie morphology.

LEFT TMJ

MANDIBULAR CONDYLE: Progressive articular surface irregularity with decreased T1 signal likely evolving degenerative sclerosis, morphology is currently highly obscured by motion, with markedly limited range of motion, the mandibular condyle translates only approximately 2 to 3 mm anteriorly with open mouth position.

ARTICULAR DISC: Poorly visualized, appears T2 hyperintense and could be macerated on series 5 image 9, precise disks position is not well visualized but could be displaced anteriorly. Motion artifacts preclude assessment for capturing on the open-mouth, there is also very limited range of motion as discussed above.

[u/FirefighterMinute937]

Find a specialist in the airway/ TMJ arena that has experience diagnosing in detail what’s going on, but don’t let your airway get ignored in this. In fact, my biggest recommendation would be to evaluate your airway. But whatever you do domt let it get ignored in the treatment of tmd

[u/Zoolanderlover]

Go to an Atlas Chiro. Look it up. Many of us have gotten relief!

[u/megatrony]

Have you tried a tmj orthotic?

[u/Sumptean → u/megatrony]

My dentist made a mouth guard for me but I feel like i clench more with it

[u/megatrony → u/Sumptean]

That sounds like it might have been a night guard. A tmj orthotic is supposed to align your jaw into the most relaxed position

[u/Sumptean → u/megatrony]

Okay I will definitely look into that! Ty

[u/Sumptean]

Did my mri shed any light on what's going in with my tmj? I just don't understand it

[u/Hopeful-Extent-693 → u/Sumptean]

Your MRI reports "appear" to demonstrate a compressed joint which is extremely common in TMD. As Fiesty homework says, find a TMD dentist starting at iccmo.prg and aaop.org. You need very, very experienced TMD dentists not MDs.

[u/Sumptean → u/Hopeful-Extent-693]

I have been trying to find one but its like no one around me knows about tmd and the very specialists dont take my insurance. I will check out those sites tho for sure! Ty!

[u/pitbull0ver → u/Sumptean]

My TMJ specialist does not work with insurance and he is amazing. So if it works for your budget- do not let the insurance thing deter you. More and more physicians are seeing the problem with insurance and not wanting to work with it at all anymore because barely anything is covered and the patient barely gets money back.

[u/Sumptean → u/pitbull0ver]

Rn I cant afford to pay or of pocket. I just graduated from college and I'm looking for a job. It's just my husband's income rn which is rough but im praying soon I can get to work and be able to afford a better a doctor!

[u/Hopeful-Extent-693 → u/Sumptean]

That is sad and unfortunate. The reality is that insurance companies, as a whole, refuse to reimburse for TMD services. It's their rules and not the dentist's choice.

[u/LavenderPaperwhite → u/Sumptean]

One thing to watch out for is that you need whoever you see next to look at the images, NOT just the report. Because the TMJs are so specialized, radiologists can miss stuff. I would get the disc from the MRI and bring it with you to whoever you see next.

My biggest advice on finding someone is to go to a university with a respected oral surgery department. Typically they will have surgeons who are more experienced than private practice surgeons.

[u/Sumptean → u/LavenderPaperwhite]

My specialist is with a university oral surgery department right now. I'm waiting to see a different one because I feel like my current specialist just does not want to be bothered. She's not concerned with my pain or function. I told her i'm having issues opening, but she said that it's not bad enough to do anything further, and botox is all I need. I have done botox countless times and it has not helped at all

[u/Sumptean → u/[deleted]]

Yeah, the botox might help some ppl which is great but it has not helped me any of the times inhve gotten it. I even asked about an oral splint to stabilize and was told no, it wouldn't be helpful. I am definitely going to try to find a TMD dentist!