Hi Elijah, for legal reasons I have just been looking into TMD and can certainly understand your problems. In my literature research I found that ES can also lead to secondary disorders of the jaw joint. TMD only describes the symptom complex, but is not a diagnosis in itself. (At least that is how it is described here). If TMD symptoms are present, it is most likely that Myoarthropathy as secondary disorder from ES is the cause. Most therapists would probably look for occlusal causes. Such problems could of course also exist and in this case a dental splint would provide relief. Otherwise only exercises for Myoarthropathy are recommended, as well as physical therapy and massages to relax the chewing muscles. Meditative exercises and relaxation techniques are also said to help. Perhaps you can find helpful exercises on YouTube. I hope this helps you.
Something like this
But any Starbucks or similar coffee stirrer would work.
P.S. No affiliation with Conor Harris. I don’t even agree with some things he says. Simply, his approach seems to be closest and similar to what I have discovered over the time.
One dentist gave me such an Aqualizer as first measure until the personalized splint was ready:
I totally agree w/ this quote based on my experience. I think I’ve mentioned this before but here it is again:
I’ve had TMJD since I was young. My jaw joints started popping & hurting when I chewed around the age of 10. My mom had a problem with it, but hers wasn’t terribly painful until she was in her 70s at which point her dentist (wrongfully I think) began grinding her teeth down to make more space for jaw movement.
I’ve found the best resource for me is a chiropractor who does jaw/TMJ work. Mine applies pressure inside my mouth w/ his fingers at the jaw joints (one side at a time). It’s horribly painful as he works stroking & pressing on the tight muscles to get them to relax. Sometimes he also has to work on my neck & shoulders when everything is bound up. I used to see him about once a month as the work he did would usually last that long, but my pain is pretty well gone at this point so I haven’t been in for awhile. I could do the internal jaw joint work myself but find it’s more effective when he does it.
I can tell when I need to see him because I start regularly biting my lower lip when eating, & I get ear pain & ramped up tinnitus.
I do believe there is some muscular and tissue involvement here, especially since it doesn’t seem my MRI shows anything significant. I was actually thinking of getting something like this until I find a Dr I trust and can work with.
I really just need something to wear while I’m working. I find myself constantly “pulling” my entire face back into my ear / TMJ area. One of the Drs said I’m always in a “bracing” position and it’s putting a lot of pressure on my TMJ. This is on top of the fact that I had my surgery there.
I’m also debating asking my Dr for strong muscle relaxers like flexiril. Baclofan, cannabis and tizanidine help some, but nothing offers massive relief. Except hot showers…that always works. Laying some helps too and I’m assuming its because my jaw and face relaxes and stops pulling everything back.
This type actually was the worst one for me … I constantly needed to clench my teeth just to keep it in place 
Ever tried electrically heated comforters? Lie on them? Infrared sauna?
Oh god, that’s not good to hear. The issue is I would need something I can use during the day while I work. Something to help keep my jaw relaxed is what I need and the mouth pieces that go over all your teeth are so uncomfortable and make it harder to keep my mouth closed.
I really wish the Botox offered at least some relief. You would think of my issue is bracing and muscle imbalances it would help, but I didn’t do anything this time. Botox only helped me once the first time I got it and then never again, and this last time Dr hackman did my pterygoids as well 
One thing I have from my first not-that-perfect surgery is some residual weakness in chewing muscles on one side.
Perhaps some small branch of the facial nerve was hit or even severed - can’t be sure, as the doctor’s notes were extremely vague and limited in comparison with Dr Hackman’s notes after the revision surgery.
So I also have some occasional tension in my jaw, and found that sometimes it helps to chew on carrots or other crunchy food or chewing gum to actively stimulate those weak muscles.
Both Dr hackman and I don’t believe that he cut any nerves to cause this. We settled on either the surgery removing too much muscle and tissue around my tmj causing a disorder, or, some sort of scar tissue thing. Could be there’s a psychosomatic or CRPS aspect to this which either causes or worsens my bracing and clenching.
I know there’s a muscular component to this because whenever I consciously relax my face my occipital region feels like it being relaxed as well. Sometimes it burns there.
I believe my treatment will end up being a combination of mindfulness techniques, some medication to help with relaxation that I either haven’t tried yet or need to try again with different doses, and maybe some pain meds.
I already tried gabapentin, amitriptyline, topamax, tizanidine, and baclofan. I may have not given tizanidine and baclofan a real shot since I never got up to full strength.
I had high hopes for trileptal due to it’s help with trigeminal pain, but it caused severe nausea even at low doses. I may try it again as well.
Cannabis seems to help some but I haven’t found the balance of getting real relief from it without getting super high, which doesn’t work for me because I have a mentally taxing job and can’t perform if I’m high.
@vdm - Good suggestion about ways to strengthen weak jaw (for me masseter) muscles on one side. Mine right side is weak & smaller than the left since my first styloidectom, but I haven’t been proactive in considering what to do about it.
@elijah - Frustrating that you have to continue on this journey to figure out what combination of therapies will finally help. The good news is you’re learning more about your body & its tolerances which will ultimately help you determine the best combination to help reduce/resolve your symptoms.
Hi Elijah,
I’m in the same group you’re referring to in your comment and the Dr. who runs the group is an actual dentist and an orofacial pain specialist. I’m seeing her next week for an appointment and an MRI of the jaw joints. I too had a bilateral styloidectomy with Dr. Hackman 3 months ago and still experiencing facial pain and headaches.
I have been communicating with Dr. Dennis on and off for several years so I know she is a legitimate specialist. Her group is not a typical facebook discussion group but mainly created to spread knowledge about the proper diagnosis of joint health which can be done only through an MRI (well and a thorough clinical evaluation), as only a properly done MRI would show both hard and soft tissue (the disc). That and provided it was read correctly by a radiologist which is often not the case. I can let you know about how my appointment goes if you’re interested.
I’d be interested in the “properly read MRI part”. If she gives any cues to look for on the images, also the MRI protocol (sequences etc), I’d love to hear about them.
I do not want to discourage you from seeing Dr. Dennis. However, I think it is important to keep in mind that TMJ surgery should be an absolute last resort and is still very experimental. Dr. Dennis is an extremely strong proponent of fat graph surgery. She read my MRI and while an oral surgeon and a radiologist both said I have some inflammation in my right TMJ overall it looks relatively fine, and recommended conservative treatment.
When Dr. Dennis reviewed it, she immediately started talking about surgery and that I need to book an appointment with Dr. Shah in Florida so he can give me a proper diagnosis.
On the group she does not allow for any discussion of other doctors or alternative treatment, essentially she says get an MRI. I’ll review it and then go see Dr. Shah because he’s the only one that can help you. No one else can help you according to her.
This is besides the fact that the surgery itself is not covered by insurance and costs upwards of $40,000 and the recovery is brutal.
I’m not saying she’s not helped anybody but she makes very strong claims yet does not seem to have any papers to back any of them up. She also claims a 99% success rate with the surgery over the last 25 years and I am extremely skeptical of anybody who claims 99% success rate from any sort of surgery. She also has nothing to back this up.
Again, I want to stress that I do believe she helps people but she might be seeing only the most severe cases and those are the people that will benefit from surgery while most will not do not need it and should not get it.
@elijah I absolutely understands where you’re coming from and I’m only seeing Dr. Dennis for a consult, I have no plans on jumping into surgery especially after just having gone through another major invasive surgery with Dr. Hackman. Nor do I have the money available to pay the surgeon’s fees that are not covered by insurance.
While she is a strong proponent of fat graft surgery she does not refer every single of her patients for surgery, she manages a lot of them conservatively, the ones who don’t have damaged joints and the ones who simply can’t afford the surgery.
I also can’t blame her for the way she runs her group not allowing certain things. I have observed her in other Facebook groups over the years that I have been a part of (trigeminal neuralgia, TMD groups etc) where she was heavily ostracized for even suggesting the idea of surgical approach to treating jaw joint damage. Which again she does not recommend to everyone. I like you was very skeptical and absolutely against any invasive procedures.
She read my MRI 3 years ago (for free) and while I did have partially displaced discs at the time she didn’t recommend a surgery but a conservative (flat plane splint) treatment. It didn’t work for me same as 4 other treatments with “TMJ specialists representing different schools of TMJ treatment philosophy ( Craniofacial pain association, orofacial pain association, neuromuscular and gneuromuscular dentistry, injections, physical therapy, massage, and even unconventional therapies like neurofeedback and hypnosis). Thousands of dollars spent with my husband having to cash in all of his retirement savings at the age of 43 and all of that yielding no results. If conservative treatments worked for the majority of people I don’t think the biggest TMD group on facebook would have in access of 70 thousand members looking for answers after multiple failed orthotic treatments.
You are right in thinking that she mostly sees very severe cases of people with significant joint damage, trigeminal and occipital neuralgias etc.
Again I agree with what you said, by far not everyone needs the surgery and many people manage consecutively for many years. I personally have exhausted a lot options and basically have tried everything under the sun so I’m willing to explore other options. But I am taking everything with a grain of salt after so many failed attempts at getting better. For now I’m just having a consult and seeing what Dr. Dennis has to say in terms of diagnosis and treatment options.
@vdm I downloaded her MRI protocol but it won’t let me upload it here due to the WORD format, I’ll try to convert it to pdf and try to upload again later today. So I cheated and just took screenshots of the file, hope this works 
All of your points are valid and you seem to know more than me with regards to TMJ, I just wanted to make sure that if surgery is recommended to you you don’t take her word for it.
Looks like you already are aware of that and in that case I do hope she can offer insight into a treatment plan for you. Do keep me updated, I’m curious what she comes up with.
By the way, this was my MRI report
MRI TMJ BILATERAL
REASON FOR EXAM: Dislocation of temporomandibular joint, initial encounter
DIAGNOSIS PER PROVIDER: Dislocation of jaw, unspecified side, initial encounter
TECHNIQUE: Multiplanar sequences were acquired through the temporomandibular joints. Imaging was performed with the mouth in the open and closed mouth positions.
CONTRAST: 0 cc of Clariscan IV.
COMPARISON: Brain MRI of 03/17/2021.
FINDINGS:
No displacement or discrete tear of the discs within the temporomandibular joints. Minor intrinsic degenerative signal in the posterior horns. Normal anterior translocation of the mandibular condyles and discs in the open mouth positions.
The articular surfaces of both joints are normal. No effusion.
Evaluation of the surrounding soft tissues reveals a pocket of CSF anterior to the left temporal lobe in the middle cranial fossa measuring 3.3 x 1.1 cm, unchanged since 2021.
CONCLUSION:
Minor degenerative signal in the posterior horns of the temporomandibular joint discs. No discrete tear, arthritis or abnormal motion.
Chronic arachnoid cyst in the left middle cranial fossa.
Dr Dennis is saying my right disc is displaced and I need to see Dr shah, so far the radiologist and an oral surgeon who reviewed my scans don’t see much for anything other than conservative treatment.
Thanks for this! Gives a good general idea what the scan is about!
@elijah Was your TMJ MRI done with mouth open and closed? It says reason for MRI “dislocation of temporomandibular joint”, did you actually experience the dislocation or was it just used as an excuse to get insurance approval? If you experienced an actual disc displacement there’s a chance your MRI wasn’t read correctly.
What is the diagnosis that your oral surgeon giving you? Inflammation is not really a diagnosis. And what conservative treatments is he offering and why, did he explain in detail what each treatment would entail?
I don’t have any “typical” symptoms as in clicking, popping, deviation, limited opening, locking. But I do get terrible face pain and headaches that didn’t respond to all previous treatments. That’s why I’m going in for this consult, just because I’m trying to find more answers and I feel like she’s the appropriate person to go to. Although she doesn’t take insurance either, it’s $1200 out of pocket but I’m planning on filing it with insurance myself and hopefully I’ll get something back as I believe she uses CPT codes other than for TMD to get insurance to cover the costs. Either way I’ll update after next week.
You obviously don’t have to go to Dr. Shah especially if you trust the expertise of your oral surgeon and if conservative treatments suggested by him help relieve your symptoms. For me none of the extremely expensive orthotics (or as I call them torture devices) helped me and 2 of them cost in excess of 10K each. The other ones were cheaper but yielded the same results.