Why Are So Many People Misdiagnosed With TMJ Disorders? With Professor Renton

[01:08] Dr. Linda Bluestein: Welcome back, every bendy body, to the Bendy Bodies Podcast. I'm your host, Dr. Linda Bluestein, the Hypermobility MD, a Mayo Clinic-trained expert in connective tissue disorders like EDS, helping you navigate joint hypermobility and live your best life. Today we'll be talking with Professor Tara Renton. I am so excited for this conversation because we're going to be talking about temporomandibular dysfunction, or what a lot of people call TMJ. So when you say TMJ, we're actually referring to the temporomandibular joint. We all should have that, but dysfunction of that joint is a whole other story. Joint pain in the jaw is so extremely common and is something that I have struggled with for such a long time. We're going to talk about the muscular aspects of this pain, how the joint can be affected, whether or not imaging is helpful, whether or not injections like Botox are recommended, and so much more.
[01:59] Professor Tara Renton is a specialist in oral surgery with an extraordinary background in dentistry, oral and maxillofacial surgery, and neuroscience. She leads internationally recognized multidisciplinary research in third molar surgery, otherwise known as wisdom teeth surgery, patient safety, trigeminal nerve injury, and orofacial pain with over 250 peer-reviewed publications to her name. Professor Renton also founded several patient-focused resources, including trigeminalnerve.org.uk, orofacialpain.org.uk, and the new website app, faceyourpain.org, designed to improve orofacial pain diagnostics. I'm so excited for this conversation because of the fact that I suffer from jaw pain and so many of my patients do. As always, this information is for educational purposes only, and it's not a substitute for personalized medical advice. Stick around until the very end so you don't miss any of our special hypermobility hacks. Here we go.
[03:00] Okay, we're back with Professor Renton, and I'm just so excited to chat with you today. As I mentioned in the introduction, I have had problems with my jaw for so many years, so this is a topic that is really, really personal to me.

[03:14] Professor Tara Renton: It is a very common problem, and particularly in people with bendy bodies.

[03:18] Dr. Linda Bluestein: So can you share how you became involved in developing the UK guidelines for TMD management and why this is so important for people with connective tissue disorders like EDS and HSD?

[03:28] Professor Tara Renton: I'd be happy to. I have to give credit to the lead author, Emma Beecroft, who's a phenomenal young oral surgery trainee. She actually led the review, and Justin Durham, who's another professor of oral surgery up in Newcastle, a great friend and colleague of mine, also was a driver behind those guidelines. I was involved partly because I publish an awful lot around orofacial pain. I was involved in the International Classification of Orofacial Pain Draft 1, and I'm currently involved in the Draft 2, which is basically where we aligned all the different orofacial pain conditions with International Headache, IHS, and IHCD. So it was the first time we actually aligned all the headache and face pains together. And as part of that, that's how I got involved in the TMD guidelines at the Royal College.

[04:19] Dr. Linda Bluestein: And what were the biggest goals or unmet needs that these guidelines were aimed to address?

[04:27] Professor Tara Renton: There were some previous guidelines, and it's such a disparate group of disorders that it's often poorly understood. There's a huge amount of work that's been done in the US around TMDs — looking at different classifications, looking at evidence-based approaches for diagnosis and treatment — but somehow this just wasn't translating into clinical care. And what Emma and Justin really succeeded in doing with the guidelines is actually coming up with an interactive "get it right first time" approach, which is an English initiative around trying to optimize care at the first visit, rather than patients coming back and back and getting the wrong diagnosis and having too much treatment. They've basically optimized it with a lot of online support. You have videos around dietary habits, you have videos around physio, about self home exercises.
[05:25] It's the first time there's been guidelines like this. I chaired the third molar guidelines many moons ago for the Royal College. It's the first time they've actually had all this online presence where dentists — and doctors and any clinicians involved in managing a patient with these problems — can actually go online, and the patient can download a huge amount of resource. And what I love about it is the holistic care. One of the first things — and I don't know if you've read any of my research — I'm very into patient-centered treatment, management, and diagnosis. The ethos behind this was to get dentists to think about anxiety and depression as one of the presenting features in chronic pain. They've introduced the PHQ-4, which is a very basic 4-question questionnaire that gives you an indicator of degree of anxiety and degree of depression. It's not a high-level indicator, but it gives you an idea of those problems.
[06:25] And then it also looks at jaw function. There's a very short questionnaire around jaw function, and then there's a questionnaire about the pain in your jaw. So there are 3 very simple questionnaires that you hand to your patient. As holistic feedback, you can get that score back, and it gives you an indicator of how badly affected the patient is, how daily function is impacted, and generally a better idea of how to manage that patient.

[06:50] Dr. Linda Bluestein: I really love that for a couple of reasons in particular. One, "get it right the first time" — I feel like with so many people who've had a problem for a long time, clinicians kind of stop really trying to look for the root cause. So the first time really is the best time to get the right diagnosis and figure out what's going on. And the other part that's so valuable is what you're saying about how it affects day-to-day function. I hate pain scores. I hate the Visual Analog Pain Scale because somebody could report their pain as a 10 or a 5 or a 9 or whatever number they're going to give it. But really what we want to know is how is that impacting them on a day-to-day basis, because that's really what's important — everyone feels pain so differently. So the functioning piece of that is so fabulous. And I've actually gone on your website and gone through the tool myself. I love it. I think it's really great.

[07:45] Professor Tara Renton: Thank you. And actually I've had a wonderful example of how useless the visual analog scales are for pain. I remember this lovely patient — he was a middle-aged professional man, and he had been treatment-seeking a lot for this pain that he had. When I asked him, as part of the Socrates pain rating on level of severity, he said, "Oh, about a 2 out of 10." And I was thinking, that doesn't match. That level of pain he was reporting on a daily basis did not match his treatment-seeking behavior. So I said to him, "Have you ever fractured a bone?" I don't know if most people in the audience have fractured a bone — I fractured my wrist ice skating with my daughter a few years back. You get that horrible deep gut feeling. It's almost, in part, a bit like trigeminal pain. It's very emotional, and there's a sort of autonomic drive. You know that you've done something really bad.
[08:19] I said to him, "Have you ever broken a bone?" He said, "Yes, actually — I've broken my leg playing football and I broke my arm skiing." I said, "So what pain did you have with those?" And he said, "Probably about a 1." So that explained it. Different people feel pain differently, and the visual analogue scale is just not really fit for purpose when it comes to diagnosing and managing patients. It might help you rate the success of treatments or interventions within that individual patient. But apart from that, it really doesn't have a whole lot of use.

[09:16] Dr. Linda Bluestein: Yeah, totally agree. For listeners who might be relatively new to this topic, could you define temporomandibular disorders for us and why they're so common?

[09:23] Professor Tara Renton: Temporomandibular disorders is a bit of a mouthful. Basically, we're talking about your jaw joints. First off, the jaw joint is the most complicated joint in the body. It's got its partner on the other side, joined by one piece of bone — there's no other joint in the body that has another joint on the other side that has to coordinate with it. The joint is also a ball and socket joint, but it also slides out of the socket. So there's a rotational movement and a translational movement — the jaw head actually leaves the socket, technically subluxing or dislocating, but not fully because the joint capsule remains in one piece. That in part explains why we see some temporomandibular disorders.
You've also got the teeth. Your hip joints and knee joints just have your feet, and feet are pretty pliable — we wear high heels, platforms, bouncy shoes, flat shoes, and those joints can put up with that. But with your teeth, it's very exacting. The proprioception is absolute about understanding that your teeth are functioning properly and meeting together. We're talking micrometres of measurements to make you comfortable about the way your teeth bite together. So those poor joints have a really big job.
[10:47] That may in part explain why we do see some temporomandibular disorders. They're basically divided into arthrogenous, which is joint-based, or myogenous, which is muscle-based. Those are the two main groups, and you may have a third group where there's an element of both. The arthrogenous type is basically described as clicking. There's a meniscus or a cartilage which is tethered to the joint space at the front and back of the joint, and that has to travel in synchrony with the condylar head — the jaw head. If it doesn't, you get clicking. If that meniscus gets trapped in front of the jaw as it moves forward when you open your mouth, you get locked opening. And if it gets stuck behind when you open your jaw, you can get closed locking. So people go to yawn and they can't open their mouth, or they go to yawn, put their teeth together, and they can't open their mouth. That's what we call disc dislocation with or without reduction. We also know that you can get arthritis, rheumatoid arthritis, and different arthritides in the jaw joint.
[12:13] The myogenous conditions are basically tenderness of the temporalis muscle — the fan muscle on the side of your head — tenderness of your masseter muscles, and tenderness of the joint itself, which may be part myogenous, part arthrogenous, part directly due to the joint. There have been some studies around eicosanoids and inflammatory markers in the joint space. There is a definite link with this pain, with oestrogen depletion, with stress, with lack of sleep.
[12:56] The big question at the moment is about function. A lot of people relate clenching habit during the day, or nocturnal bruxism or daytime bruxism — which are grinding your teeth — to joint pain. But the recent evidence is really indicating that actually bruxism and clenching do not drive jaw muscle pain or jaw joint pain.

[13:20] Dr. Linda Bluestein: Really?

[13:20] Professor Tara Renton: So that's a good myth to sort of dispel. And also the evidence for splints for jaw pain is quite equivocal. There isn't an indication to spend $4,000 on a special splint rather than just having a simple blowdown splint. What those splints are doing is they may be symptomatically helping the patient — there may be a placebo effect. What they are doing is protecting your teeth from the grinding and the bruxism, because obviously grinding and bruxism do damage your teeth. Particularly if you're older like me with lots of fillings, your teeth will break and fracture. So that's the main indication for splints for those conditions.
[14:18] There's some very interesting evidence coming out around nocturnal bruxism, which coincides with — have you heard of paroxysmal limb movement? When you wake up in the middle of the night having felt like you've tripped over a pavement, that's what some people call restless leg syndrome during the day. If you have this limb movement at night, that's due to arousal phases in your sleep, and that's when nocturnal bruxism occurs. So there's more interest now in reclassifying nocturnal bruxism as part of a neuromuscular sleep disorder.
[14:58] And I also have to say there is increasing evidence of the comorbidity of migraine. I'm a bit out there on this because the evidence isn't there yet, but I have this empiric feeling that around 60% of my patients with myogenous TMD — which is by far the most common — have comorbid migraine. When you have a migraine, it affects the whole side of your face, not just up here, but here and here as well. And we know with migraine you get sensitivity to touching your skin, brushing your hair, cold sensitivity. So why would that not affect the muscle sensitivity and the joint sensitivity if you've got a background of migraine? And obviously there's a huge hereditary factor to migraine as well. We recommend screening for migraine in the guidelines, which is also part of the holistic assessment.

[16:09] Dr. Linda Bluestein: And migraine is so, so common in people who have HSD and EDS. So, so common.

[16:16] Professor Tara Renton: Incredibly common. It's sort of part of that picture, really. And that's something that as dentists we are not trained in — we're not trained in psychology, we're not trained in headache neurology or headaches. We haven't got a clue. The reason I've been introduced to this is because I did a PhD in nerve injuries related to wisdom teeth. I'm a maxfax surgeon by training, and that's how I ended up finding out about nerve pain, which no one really knew existed in those days — neuropathic pain was a relatively new concept. That's how I ended up running pain clinics, and then I ended up working with clinical psychologists, psychiatrists, headache neurologists, ENT, and neurosurgeons. I've learned so much from the headache neurologists and how important it is to screen for migraine. We use a HIT-6, a very simple 6-question questionnaire that gives you an indicator of the impact of migraine. And then, of course, working in the clinic with the headache neurologists. We also see some very other interesting primary headaches as well, like cluster headaches, which are rarer but very impactful and also cause pain in the face.

[17:32] Dr. Linda Bluestein: So we know that people with EDS and HSD are definitely at increased risk of having migraine, but why do you think — in addition to that — why are they so vulnerable to having TMD?

[17:43] Professor Tara Renton: As I've said, I think a big proportion of myogenous TMD, which is the most common, is probably in part due to the migraine background. That's my philosophy. The evidence is not there yet, but we've got a paper coming out. There are a couple of papers around treating myogenous TMD patients as migraine patients, and their symptoms go away.

[18:08] Dr. Linda Bluestein: Really?

[18:08] Professor Tara Renton: Yes. And if you think about the prevalence of migraine — onset of migraine happens with the beginning of menstruation in many women. And TMD often starts then as well. TMD happens around stressful periods of life — rarely as early as changing schools, but that's becoming more common in younger people. The peak incidence is around exam times at 16 to 18, going to university, and then it comes back again in later life around divorce or redundancies. So stress is a big, big driver, and stress drives migraine. It's more of a sort of association rather than a direct cause, but I'm beginning to believe that the migraine background will make you more at risk. The CGRP low-threshold release, which is what causes a migraine, is somehow embedded in a lot of the other conditions that we see.

[19:15] Dr. Linda Bluestein: What about the connective tissue laxity? Does that contribute to the instability of the jaw?

[19:21] Professor Tara Renton: Yeah, absolutely. In the arthrogenous group, I talked about clicks and locking — closed locking, open locking without resolution. The jaw joint has a capsule and a meniscus with ligaments front and back. Those ligaments, if they're stretchy — as in pregnant people, people on steroids, and people with HSD and EDS — are going to be more lax. That meniscus is going to have more ability to go too fast, too far forward, too quickly, or stay back behind when it shouldn't because the ligament at the front is too stretchy. And that will give them locking, give them clicking, and give them jaw dysfunction.

[20:05] Dr. Linda Bluestein: What about the comorbidities that we commonly see with EDS and HSD? For example, POTS, postural orthostatic tachycardia syndrome, mast cell activation disorders, small fiber neuropathy, central sensitization, et cetera. How do you observe those influencing TMD severity or treatment?

[20:25] Professor Tara Renton: Dysautonomia — we do see that. We don't look for it as much as we should. I interestingly diagnosed a patient with that just this week, actually. But it's something we don't look for enough. We certainly screen all our patients for comorbid back pain, neck pain, headache, and TMD. It's been very well published that those comorbidities coexist. Did those papers from 20 years ago look at HSD or Ehlers-Danlos? No, they didn't. And it would have been very interesting to look at the proportion of patients — I suspect it would have been a high number.

[20:58] Dr. Linda Bluestein: And what about imaging findings? How helpful is that, especially in people with connective tissue disorders?

[21:05] Professor Tara Renton: Not helpful at all for TMD, not really. If you've got someone who's repeatedly dislocating and cannot reduce the dislocation, then you want to have a look. And if you've got someone who perhaps is presenting with severe arthritis, you may want to have an MRI scan or a CT scan of the joints. But generally, TMD is a clinical diagnosis, just as post-traumatic neuropathy is a clinical diagnosis. Imaging is not that helpful for pain conditions.
[21:40] There was a fantastic study in America around 20 years ago where they looked at knee pain. They did sham arthroscopy in half the patients, and there was no difference between not doing the arthroscopy and doing the arthroscopy. And very interestingly, the imaging showed that you could not predict, based on the radiographs of the knee, whether there was pain or not. It just doesn't compute.
[21:59] There may be an opportunity with a new development, which is MRN — magnetic resonance neurography — which I'm involved in, in the head and neck region. We're just developing it at King's. It's well established in the States, where you can see nerve tissue and some arteries using specific MRN, and that may be more useful and may actually enhance some of the soft tissue imaging too. But that's probably not relevant for TMD.

[22:36] Dr. Linda Bluestein: I have so many patients that have been to chiropractors, and oftentimes they've had imaging of their backs — some of them are very young — and the chiropractor has said, "You have the worst spine I've ever seen." One of the downsides of imaging is, like you said, it depends on whether it's going to change what your next step is. But sometimes I feel like there are things that are said that influence our pain and our ability to improve, because we feel like there's just no way we can get better with this terrible damage in our bodies. There was actually a study that looked at radiology reports — in half the reports, the radiologist added something like "age-related changes" or "consistent with age," and in the other half they didn't. And they found that those patients did better than the ones who didn't have that note in the report. So what would you say to people who say, "Yeah, but I had imaging done and they saw damage, therefore I'm always going to have pain"?

[23:38] Professor Tara Renton: It depends. I'm not a spinal expert.

[23:41] Dr. Linda Bluestein: As it pertains to the jaw, sorry.

[23:44] Professor Tara Renton: Yes, to the jaw. It frustrates me that any test — like a blood test — could be the worst possible result, and the patient's not the expert. The patient doesn't know what those results actually imply. So I think without explanation of why that radiograph or that imaging shows something particularly wrong, you know, if they've got a disc herniation or something like that which hasn't been picked up before, then that's significant. But the pain diagnosis, as I've mentioned, is a clinical diagnosis. And it frustrates me that, as you've alluded to with the study you mentioned, the reference to how bad the X-ray is often almost reinforces the patient's need for treatment that that clinician wants to give. I find that very frustrating.
[24:39] If you take radiographs of most people's jaws, you might find a bit of erosion, you might find age-related changes, but unless it's a fracture or there's some neoplasia or some other pathology, you're not really going to find a lot wrong with the jaw joint.

[24:59] Dr. Linda Bluestein: And it's so frustrating because it goes both ways — there are also people who have things like compression syndromes or cervical instability and their imaging is read as normal, because the radiologist isn't necessarily looking for these really fine points, or they're not assessing it during movement. So I love what you said about doing imaging while opening and closing the mouth, because there's a lot more than just what we might see on those static images as well.

[25:29] Professor Tara Renton: I think the hope there may be AI in the long term.

[25:33] Dr. Linda Bluestein: And based on the UK guidelines, what does first-line treatment look like for most TMD patients?

[25:41] Professor Tara Renton: Essentially, it's reassurance and information. There's a lot of information for the patient on the website that they can download, and there are videos as well. It's very much empirical, non-reversible strategies. Reassurance, pain management, advice around diet and daily activity — maybe reducing to a soft diet, possibly stifling yawns. Obviously, if you've got patients who love singing or play wind instruments, you may have to see if they can modify their behavior in terms of stressing the jaw with wide opening. We know that every time you go to the dentist for prolonged procedures like wisdom teeth extractions or crown and bridge work, you're sat there with your mouth open for a long time. Your dentist should be giving you a prop so you can relax with your mouth open. Twenty percent of patients after prolonged dental treatment will get jaw pain — muscle pain or joint pain — and that can be mitigated by just giving the patient a prop to rest on whilst having treatment.
So there are a lot of preventative strategies. If the history is good, you'll often find that patients are getting jaw pain after general anaesthetics, after visiting the dentist, or after choir practice. There are things you can pick out and modify to help them.
[27:07] The next level is possibly an occlusal splint, which is empirical. As I've mentioned, there's very little evidence to support that it actually helps. You would have screened out high levels of anxiety and depression very early on in the screening, and those patients need a referral — to general medical practitioners in the UK, or physicians in the US — for perhaps psychological intervention. Splints might help some patients if they come back after 6 weeks with minimal improvement.
You also want to look at red flags early on. If their trismus is worsening — if their jaw opening is reducing more and more — that's a significant issue. All those red flags we think about: persistent lymphadenopathy, night sweats, weight loss, previous reported cancer. Those come up in a very small proportion of patients, but if they do, that's an urgent referral. We have a neoplasia or suspicious referral network within 2 weeks in the NHS. Once you've flagged out the anxiety and depression, flagged out the red flags, you treat the patient basically symptomatically with reversible strategies and work down the algorithm. There are 3 levels. If patients don't respond, they go on to secondary referral — they might get a splint made or more treatment. And probably most of those patients have ongoing migraines, so better management of their migraine, which their GP can address.

[28:51] Dr. Linda Bluestein: And I want to point out too that with anxiety and depression, those so commonly occur with any kind of chronic pain. If we don't address the anxiety and the depression, we're not really going to make headway in terms of the pain. I know some people might think, "Oh my gosh, you're saying the pain is all in my head." But this is where we feel everything — it's between our ears, that is where we process all information. So in one sense it is all in our head, but that doesn't mean that we're making it up. Pain is always real. It's always what the person says it is. Nobody else knows what kind of pain you're feeling. And I think a lot of people maybe misunderstand this link with anxiety and depression and don't realize that those things, when they coexist with persistent pain, there's just no really good way of getting the pain better unless we also address them. Just like with sleep — if somebody has poor sleep, we have to address that in addition to addressing the pain, because otherwise we're just not going to make headway. Would you agree with that?

[29:56] Professor Tara Renton: I absolutely agree with you on so many counts. Mood disorders, anxiety, and depression basically follow the same pathways as chronic pain. Healthy pain is different — we should park that distinction. Healthy pain protects you. You've got an infected tooth, you've got your finger stuck in the door, you've stubbed your toe. Those are healthy pains telling you that you've done damage to your body and you need to stop doing it, take it away, rest. A fracture — rest your leg, let it heal, then get back on it. Healthy pain is healthy pain, usually resolved within a few weeks, certainly within 3 months.
[30:29] Chronic pain is different. It's either nerve pain or nociplastic pain. A lot of the neurovascular pain and the myogenous pain could come under the sort of nociplastic, fibromyalgia-type, unexplained-pathway category, whereas the nerve injury pain is better explained. For both types of chronic pain, there is a disconnect between where we feel the pain in the somatosensory cortex on the opposite side of the toothache or the fingerache, and once that's healed, for some reason — and you mentioned central sensitization — you have this memory of pain that persists. Emma uses the term "text messaging." It feels like your tooth is still text messaging your brain saying, "Help, help, help," but actually all the tissues are healed and completely normal. It's a disconnect between the midbrain, where the trigeminal nerve neurons are, and the limbic system.
We know that if you have anxiety and depression, you're more likely to develop chronic pain. Certain personality types, those who are less resilient, are more likely to develop chronic pain after a simple procedure. Anxiety and depression have to be looked at in any patient presenting with chronic pain, because as you've mentioned, if you don't deal with that, and sleep disorders, and prior adverse life events, you are not going to manage that patient's chronic pain.

[32:08] Dr. Linda Bluestein: Yeah, and I think on the one hand it can be — when I first learned about catastrophization, it was kind of like, oh my gosh. But it's a little bit empowering because you realize, okay, here are some modifiable factors. I know I've had lifelong anxiety. When I realized that by addressing my lifelong anxiety that would help with my pain, that was a lever that I could pull. And I love the text messaging analogy. That's really great — "my tooth is still text messaging." I think everyone can relate to that visual.

[32:42] Professor Tara Renton: Yeah, thank Emma for that. She does a really lovely lecture on chronic pain. She's a bit of a star, and she was the one who led the TMD guidelines. Patients definitely get that analogy.

[32:53] Dr. Linda Bluestein: Yeah, we can really relate to that. Okay, we're going to take a quick break, and when we come back we are going to talk about some of the therapies that people are doing for TMD — like prolotherapy, PRP — and whether these things are really helpful or not, physiotherapy, et cetera. So we'll be back very soon.
[34:37] We are back with Professor Renton, and I am so curious to ask you about injections and some of these procedures that get recommended so often to patients. We're going to talk about local anesthetics and a whole bunch of other things. But first, in this earlier phase of treatment, I want to talk about physiotherapy. When is that helpful? How do you identify a therapist with appropriate training? What are your thoughts?

[35:03] Professor Tara Renton: Certainly physiotherapy does have a role in patients who perhaps don't respond to just simple step 1 in the Royal College of Surgeons guidelines — which is basically reassurance and some habitual changes. So if they've been reassessed at 6 weeks and still have some symptoms and haven't completely resolved, or only partially resolved, then you think about adjunct treatment. I mentioned splints, even though they have a very equivocal evidence base. We also talk about acupuncture and physiotherapy, which have a moderate evidence base in managing patients.
[35:38] I think you have to be very careful. Acupuncture is acupuncture — I'm not an expert in that area, but I know it helps an awful lot of my patients with lots of different types of pain conditions. The physiotherapy question around finding someone who knows what they're doing — there are resources on the Royal College of Surgeons website which show what sort of physiotherapy might be appropriate. Some patients will get worse with it, because more mobilizing of their joints will actually cause more irritation and pain, whereas other patients seem to respond very well. So again, it's personal, and different people will respond differently. That's a sort of second-stage treatment, and in the guidelines, patients would be reviewed again at 6 to 8 weeks after those interventions.
[36:27] Hypnotherapy is not mentioned in the guidelines, but step 2 also talks about self-referral for anxiety and depression that needs to be managed concurrently, to make sure those issues are addressed.
[36:42] As far as more interventional treatments are concerned — you mentioned injections. Arthrocentesis, where you wash the joint out, you might inject different steroids, sometimes some thickening fluid to help the joint work better, PRP. There's really limited evidence around doing that. I've seen many patients over the years who symptomatically get some relief from that, but it's not evidence-based.
[37:12] And then right down the line where patients are having jaw replacement surgery — it really is very, very rarely indicated, usually for patients who've had old fractures, coronoid fractures, maybe they have pathology, or they have congenital disorders where the jaw joint hasn't completely formed. Surgery is not something that should be indicated for TMDs. Those interventional treatments are not reversible, and we very much err on the side of reversible treatments.

[37:45] Dr. Linda Bluestein: Did you mention hypnotherapy in there?

[37:48] Professor Tara Renton: Yes, hypnotherapy — it's not evidence-based, but a lot of my patients have responded very well to that. But that's not in the guidelines. There's not sufficient evidence to put it in the guidelines, not as much as physiotherapy and acupuncture.

[38:02] Dr. Linda Bluestein: I was hypnotized once and it was really fascinating. I was in so much pain. I was actually sitting next to a psychologist who did a lot of hypnosis, and he was explaining to me about hypnosis and the role he felt it could play in chronic pain. At that time, my pain was so poorly controlled. I sat there and he walked me through the whole thing — you're going down the staircase or whatever it was. And when he was getting ready to bring me back out of it, I was like, "No, no, please don't," because my pain had gone away. From the neck down, I felt—

[38:37] Professor Tara Renton: Interesting.

[38:38] Dr. Linda Bluestein: Yes. And I'm probably one of the best candidates for this kind of therapy. I think there's probably a lot of individual variation in terms of susceptibility to it, but it was very successful for me that one time. It really just made me realize how powerful the nervous system was in processing pain signals. He didn't touch my body — he just hypnotized me and I could feel nothing from the neck down, which meant I also could not feel pain from the neck down. So that was really, really a fascinating experience. Just an anecdote, of course, but very interesting.

[39:20] Professor Tara Renton: It's really interesting. It has helped relatively few of my patients, but if you think about it — sleep basically, in the deep phase, shuts down your somatosensory system. You're still breathing, your gut's still working, your heart's still pumping, but your somatosensory system is shut down. And it would be very lovely to harness that. That's probably what hypnotherapy is doing — it's like the ultimate downward pain modulation at the midbrain, stopping the feedback coming up.
[39:55] If we could harness that, and it won't be a drug, and it won't be an injection, it'll be using those soft skills, giving patients the ability to do that kind of thing. A lot of what we do is actually trying to enhance downward pain modulation — gut health, treating psychological morbidity, explaining, giving them clear diagnosis and prognosis. All those things will help patients manage their own pain. And that's probably the best thing we can possibly do for the patient: not sign them up for another drug or another injection or another newfangled treatment that came out last week, but help them harness those internal mechanisms.

[40:41] Dr. Linda Bluestein: And just to clarify, we're talking about the unhelpful part of pain, right? There's lots of pain that is helpful, that is important and necessary so that we know to make a change.

[40:58] Professor Tara Renton: Healthy pain and unhealthy pain. Unhealthy pain is basically a pathology — a disease of the neurosystem. Chronic pain is where the neurosystem, the texting's still going to the somatosensory cortex, and the brain's saying, "I've still got pain in my foot, still got pain in my foot." But actually the foot's completely fine. It's the nerve and the junctions on the way to the somatosensory cortex that are generating this texting. And central sensitization is one explanation.

[41:26] Dr. Linda Bluestein: And when we think about injections, of course, a lot of injections do involve local anesthetics, or we might be injecting local anesthetics before we do the injections. And we know that there is data showing that people with hypermobile EDS are less sensitive to local anesthetics — in many cases, they might need a higher dose, it might not last as long, it might take longer to onset. What do you observe in your practice?

[41:54] Professor Tara Renton: I lecture a lot around local anesthetic. One of my favorite lectures is called "Comfortably Numb" — a bit of a Pink Floyd fan. It's very interesting that dentistry is special in that we do really quite high-tech, difficult surgery in a difficult area in the mouth, on the most difficult nerve in the body. The trigeminal nerve is the one nerve that protects all your eyes, your nose, your mouth — all the things that underpin our existence and our identity. If you have pain in this region, it's pretty horrible. It takes over your life. The nerve is really special, and it also has a direct feed into the limbic system. Unlike spinal nerves, which have a slightly more relayed connection to the limbic system, the trigeminal nerve has like a straight arrow to the most sensitive part of the brain. So we dentists work on this nerve in patients that are awake, paradoxically. And that's down to history — dentistry came from barber surgeons. Dentists actually invented general anaesthetic, but the medics walked away with it and decided it was a really good idea to operate on patients that are asleep. How that never happened in dentistry, I don't know.
[43:10] Dentists are very reliant on local anaesthesia. And as dentists, we very often don't actually ask the patient if they're okay. There was a dental survey done in 2009 which showed that like 30% of patients had moderate to severe pain during just routine dentistry. And everyone who goes to the dentist expects pain because that's what they experience. So what we do as clinicians could definitely be better.
There are 3 groups of patients who we know don't respond to local anaesthetic very well: pregnant patients, redheads, and hypermobility patients. The HSD and EDS patients are particularly insensitive to local anaesthetic. So we have a real issue where we're not recognizing this in our patients. If you're red-haired and hypermobile, when you have one of those deep inferior dental block injections — the one that goes in the back of your mouth with a long needle — dentists should be waiting 10 minutes for those blocks to work. But they don't. They start drilling and filling straight away.
[44:31] And if you are one of those groups, it can take up to 18 to 20 minutes to get the best pulpal anaesthesia given by that injection. But what's really important is that inferior dental block injections are actually not great. There's a much better way of doing local anaesthetic, which is using articaine — a slightly stronger anaesthetic — just in the gums, buccally, in the mandible. You just use lidocaine infiltration in the maxilla. But you use articaine buccally in the mandible, with sometimes a lidocaine top-up lingually, and you can do most dentistry just with infiltrations and get much better pulpal anaesthesia, much better pain relief.
[45:27] So hopefully your patients can be educated when they go and see the dentist. First, they ask for a mouth prop so they can rest their joints. Second, they ask for infiltration dentistry rather than a block injection, because it works much quicker, and there's less pain. There are no studies yet specifically in EDS or HSD patients for this, but the likelihood is — because the pulp density is so much better — it's going to work better.
[46:02] There's just one really good study by Schubert — I can share that reference — which looked at around 900 people who were non-responsive to local anaesthetic. Those with EDS had a 33% rate of non-response to normal inferior dental block anaesthesia, which is a big number. And often you're at the dentist and you say, "Actually that hurts," and the dentist says, "Oh rubbish, I've given you an injection." Ken Hargreaves, who is the king of local anaesthesia — an endodontist and pharmacologist in Texas, a great mentor and colleague of mine — has been saying for years: you need to wait for an inferior dental block to work. And actually, if it doesn't work, giving another one is probably not going to help. You need to do a different technique with different anaesthesia.
[46:47] So all these things can be simplified down to: give injections in the buccal area of the mandible if you're having lower jaw dentistry, and use routine infiltration anaesthetic in the maxilla. The Schubert study showed that articaine was the better local anaesthetic for EDS and HSD patients. The evidence isn't all there, but common sense prevails that that would be the best way to manage those patients.

[47:17] Dr. Linda Bluestein: I love that. Those are such great practical tips. So just to recap, because I feel like people are really going to want to write this down — they're driving in a car, they're going to pull over, or they'll want to listen to this part again. What you're saying is that when they go to the dentist, respectfully of course, they should ask for articaine — A-R-T-I-C-A-I-N-E.

[47:41] Professor Tara Renton: Yes, a buccal infiltration articaine.

[47:42] Dr. Linda Bluestein: Infiltration articaine.

[47:42] Professor Tara Renton: Articaine works really well as infiltration dentistry. You don't want the higher concentration as a block because there's an increased risk of nerve injury. So you'd want to avoid those deep block injections and ask for infiltration dentistry. And if the dentist doesn't know what it is, send them to my website or get them to email me and I will give them a quick, swift introduction to infiltration dentistry. For implants, everyone uses infiltration dentistry — hardly anyone gives a block for that. So why give a block for routine dentistry? It just doesn't make sense. And if you do give a block, you need to wait longer.

[48:25] Dr. Linda Bluestein: Thank you so much for that. That's really, really valuable. And the part about the — we call it in the US a bite block. Is that what you're talking about, for when they're working?

[48:35] Professor Tara Renton: Yes. I think a lot of people will think of One Flew Over the Cuckoo's Nest — it's one of those big bite guards you put in the patient's mouth when they have a general anaesthetic and you're doing dental work on them, because you have to keep them open. So bite block is probably the right description. I think we're talking about the same thing. It's something about two fingers thick, and you put it between your teeth and just relax open on that bite block.

[49:01] Dr. Linda Bluestein: So interesting that you pointed that out, because that is literally when my jaw went from being, you know — I did have a splint that I wore at night, but my TMD was completely manageable. I went in to have a tooth worked on, and it was the same dentist who had made my splint. So I thought, well, of course he knows that I have TMD because he made my splint. I did not think to point it out to him, and they did not use a bite block. I was literally — I've had 2 children — I was panting like I was having a baby it was so painful. And that's when they finally put the bite block in. In hindsight, I should have made sure they remembered that I had preexisting problems with my jaw. And that is really when things flared up and became so much worse. So I'm really glad that you pointed that out.
[51:57] And I want to come back to what you said about the trigeminal nerve — you made some very interesting comments about that. But I want to kind of wrap some of this other stuff up first. Okay, so speaking of flares — for people who already have problems, jaw pain, maybe hypermobility — what kind of strategies can they employ to help prevent a flare or worsening of their symptoms?

[51:57] Professor Tara Renton: Prolonged mouth opening — so dental appointments, general anaesthetics, singing, opera singing, wind instruments, chewing gum, biting into apples, toffee apples, burgers. Just chop food up and try to soften it as much as possible. Analgesics if you need them, but not opioids. In America you've had this horrible experience of using opioids routinely for pain. Luckily in Europe, we never did that. Paracetamol and ibuprofen — or acetaminophen and ibuprofen, as you call them in the US — are all you need. They're the best possible painkillers and anti-inflammatory painkillers that you can use. And use them together, because they work synergistically, they make each other better. So take them at the same time if you can take both.
[51:57] Going back to what we were talking about with interventions — if your jaw pain is not responding to the splints, to the soft diet, to changing behavior, and you've tried acupuncture and physiotherapy, and it's still not responding, then there are other things we use for other chronic pains like migraine. It may be that you've got migraine that needs to be excluded. But drugs like tricyclic antidepressants, amitriptyline, some of the GABAergic drugs — some of those might help with the pain if it's still debilitating. Those drugs deal with neurovascular and nerve pain and might help take the notch of the pain down so you can actually function daily better.

[51:57] Dr. Linda Bluestein: And I do also want to point out that when we're talking about nociplastic pain and neuropathic pain, mast cells are also involved in the maintenance and persistence of chronic pain. So people who have mast cell instability or mast cell dysfunction are definitely at higher risk. And I've really found that treating the mast cell problems helps with pain a lot.

[52:20] Professor Tara Renton: I'd love to talk about gut health as well. Your endogenous pain modulation system — the best source is if you can actually make your own drugs. Dopamine, serotonin, all those amazing chemical mediators of pain that we have in our downward pain modulation system — they're made by healthy gut bacteria. So you can really, by optimizing your gut health, maximize those pain-modulating chemicals. Rather than taking drugs, you can do that all by yourself by massively improving your gut health. And there's all that information available out there, and it's on my websites as well.

[53:04] Dr. Linda Bluestein: I'm glad you pointed that out. I totally agree. I did not appreciate before I really started digging into EDS, HSD, persistent pain, and other problems like fatigue and orthostatic intolerance — whether they meet the criteria for POTS or not — and the mast cell problems and all these things that are co-occurring, and how one of the common threads is the gut. If you can work on that, you can often improve at least some of those symptoms. So I'm glad you pointed that out. Let's talk about Botox.

[53:38] Professor Tara Renton: I haven't had Botox.

[53:40] Dr. Linda Bluestein: Oh, you haven't? I've had it. I actually had it a couple of times for my crow's feet in the operating room because one of the ophthalmologists was doing some injections behind the eyes under anesthesia, and he had leftover Botox and was like, "Does anybody want it? I'll just inject it." One of the perks of being an anesthesiologist. And then you go back to talk to your next patient and realize that you've got little marks here from getting Botox. So what does the current evidence say about Botox for TMD, and does it worsen joint instability?

[54:18] Professor Tara Renton: That's a really good question. I don't know the answer to the second question. The evidence is not strong enough, really. It's something that is mentioned in the guidelines, but the evidence is again equivocal, like the splints. My argument would be that I would personally be very worried about having repeated onabotulinum toxin — the proper name for Botox — injections, because we are seeing patients with botulism now.

[54:49] Dr. Linda Bluestein: Oh, really?

[54:50] Professor Tara Renton: So you need to be really careful about whether this is indicated or not. The highest evidence for botulinum toxin injections is for migraine. And a lot of the places you might inject in and around the TMD, the temporomandibular joint, come very close to areas that work for migraine. I would suspect that if your myogenous TMD is responding to Botox injections, it's very likely that you've got a significant migraine component to your jaw pain.
[55:29] I would be very worried about having intramuscular injections. We know that botulinum toxin needs to be deposited near the nerve endings and has to be taken up into the nerve and actually processed in the ganglia, the cell bodies. So by injecting into the muscle, I really don't know what you're achieving apart from necrotizing the muscles. You might want that if you've got a square jaw and want your soft tissue reduced, but I would not be an advocate of that. The evidence is poor.
[56:00] I would say that if you've got migraine and you've been through all the different mechanisms, the different types of drugs and regimes to minimize your migraine, then botulinum toxin injections would be recommended. I would not recommend them personally just for TMD, unless you've got myogenous TMD which is probably mainly driven by the migraine, and then it might be a good indication. But the evidence is poor.

[56:32] Dr. Linda Bluestein: If you could change one thing about how clinicians diagnose or treat TMD, what would that be?

[56:40] Professor Tara Renton: Assess the patient holistically. Look for migraines, look for mood disorders, assess how they're managing on a day-to-day basis, and apply common sense — reassure them, get the diagnosis right. And do reversible therapies, starting with the step 1, step 2, step 3 ladder that we have in the RCS guidelines. Very simple strategies.

[57:05] Dr. Linda Bluestein: And what are the key things that you want patients to know about their jaw pain?

[57:11] Professor Tara Renton: Good question. The temporomandibular joint disorders classification excludes trauma and excludes pathology. So when we're talking about TMDs, we've already excluded all those things. But I would say to the patient: if your pain is getting worse, your trismus is getting worse, or there are concerns that it's worsening — not just staying the same and not getting better, but actually worsening — then you need to revisit your clinician and get it reassessed. That would be probably my number one thing, because that's the first thing we exclude when we see the patient.
[57:48] The second thing is: you're not alone. Very much like migraines, particularly myogenous TMD — the muscle-based jaw pain — is really, really common. It's stress-related, it's anxiety-related, it's sleep deprivation-related. All those features are manageable, in theory. So self-management, understanding your condition, understanding that it's self-limiting, that there's no pathology, no nastiness going on that's deteriorating — unless you've got arthritis of the joint, and that's different; we treat that with analgesics mainly. But it's not causing you more harm.
It's about being cognizant that you have this condition, managing your stress, managing your migraines and other pains, and being reassured that it's a common condition — but actually a lot of the factors that drive it can be mitigated, and you really can minimize the impact on your life. And 40% of cases disappear. They're self-limiting for a lot of patients. They happen around stressful periods of your life, when you're not sleeping. So when those things are fixed, it often disappears, much like migraine patients will tell you the same thing.

[59:29] Dr. Linda Bluestein: So I want to come back to that, because you said TMD — at least this is what I heard you say — TMD refers to dysfunction of the temporomandibular joint. By definition it's temporomandibular dysfunction. But it excludes pathology, it excludes trauma, I totally understand. But like in my case, I know that I have arthritis in my jaw — you can see it on plain X-ray, my dentist pointed that out. So I guess, because we were talking about imaging and how that's not always indicated, but then from a diagnostic standpoint, now it is maybe sounding a little bit like it is, because you need to perhaps rule those things out, because they're going to be treated differently.

[1:00:14] Professor Tara Renton: Yeah, I don't think you need an X-ray to confirm you've got arthritis of a joint. If you've got really quite disabling or progressive arthritis, then yes. But I don't think the arthritis guidelines worldwide involve taking an X-ray of every single joint.

[1:00:35] Dr. Linda Bluestein: Right. No.

[1:00:37] Professor Tara Renton: So I stick to my guns on the imaging. The diagnosis is very simple — you palpate the muscles. You take your jaw function questionnaire, you take your PHQ-4 for anxiety and depression, and then you palpate the masseter, you palpate the temporalis. We used to have to palpate the medial pterygoid by sticking a finger down the back of the patient's throat. It's no wonder the patient felt pain — it's horrible. We don't do that anymore. Basically, you ask the patient if they have pain during function, and familiar pain when you palpate over the jaw joints. That's your diagnosis — once you've screened out all the other things like pathology, prior trauma, and widespread arthritis. Arthritis very rarely affects the jaw joint, interestingly, but that's something you will take as part of the history.

[1:01:30] Dr. Linda Bluestein: So as part of the history, you would be asking if they have arthritis in other joints?

[1:01:34] Professor Tara Renton: Absolutely. Something we haven't talked about is reactive arthritis. I've seen a lot of patients with that — patients who've had a recent flu or recent viral infection. You might forget to ask, but you say, "Have you had a recent viral infection or flu?" And they'll say, "Yeah, actually." And then, "Did you have joint pain with that?" "Yeah, I had joint pain everywhere. Is that when the joint pain started in your jaw? Yeah, it was about 6 weeks ago." Reactive arthritis is really common, and we forget to ask about it. And it's also usually self-limiting. It's very rare that it will persist, but it's really important to ask about.

[1:02:18] Dr. Linda Bluestein: And I wonder if people with hypermobile EDS are more prone to that. I know there are definitely lots of data showing that they're more prone to long COVID or persistent symptoms related to COVID infection.

[1:02:29] Professor Tara Renton: So tricky. Poor patients.

[1:02:31] Dr. Linda Bluestein: Yeah. And so often they're young and have so many years ahead of them that they could really be highly functional and enjoying life. But that's why I do the podcast — because I feel like there needs to be some way for people to learn little and big hacks. We're going to get to the hack in a minute. But your hack about asking for infiltrative articaine when you go to the dentist for local anaesthetic is really, really useful. And the bite block, or bite prop.
[1:03:07] And I did want to very quickly, before we go to the hack — I almost forgot — the trigeminal nerve. Somebody had asked me before to talk about trigeminal neuralgia on the show, and it's something that we really have not talked about. So anything that you're willing to share about the trigeminal nerve, how people would know that this is a problem for them, and what they can do about it?

[1:03:32] Professor Tara Renton: I would love to do a separate podcast just on orofacial pain.

[1:03:35] Dr. Linda Bluestein: Oh, okay.

[1:03:35] Professor Tara Renton: Because trigeminal neuralgia is the least likely diagnosis that we're going to make. I'm actually lecturing the Association of British Neurologists on Wednesday — it's called "Facial Pain Beyond Trigeminal Neuralgia." Trigeminal neuralgia affects between 1 and 3 in 100,000 patients. It's incredibly rare. It's in older patients. It's spontaneous onset. It's elicited pain, usually triggered extraorally around here, though sometimes inside the mouth, which complicates things — people think they have toothache and end up having treatment, when their trigeminal neuralgia was already there. There's an 18% hereditary rate, which is really interesting. If you're interested in reading more, Giorgio Cruccu is the lead Italian researcher alongside the worldwide team in this area. It's all on my orofacial pain website.
[1:04:23] It's one of the few conditions where when we do diagnose it — and we need to make sure we diagnose it correctly — patients with nerve injuries, post-traumatic neuropathy, are frequently misdiagnosed with it. Patients with migraine, patients with trigeminal autonomic cephalalgias — the cluster headache group — these patients are constantly misdiagnosed with trigeminal neuralgia. Some of them even go and have microvascular decompression and brain surgery when they didn't have TN in the first place.
So TN is a really interesting condition. Very simple diagnosis, very simple treatment structure. We used to say, wait until you don't tolerate the medications. We don't do that anymore. Before you get an MRI scan, you look for neurovascular conflict — which gives you one type of trigeminal neuralgia, where the cerebellar vein or artery is pressing on the root of the trigeminal nerve where it comes out of the midbrain. You look for pathology, space-occupying lesions, and in younger patients, you look for demyelination — things like multiple sclerosis. Orofacial trigeminal neuralgia is one of the early presenting signs in MS, so you want to exclude that. You want to exclude neoplasia. And then you want to know if the patient's got a neurovascular conflict, because long-term, when medications aren't working — or they're pilots or HGV lorry drivers who cannot tolerate medication — they'll get fast-tracked to microvascular decompression. It's a very effective surgery. It's brain surgery with morbidity — 1% mortality, 1% meningitis. Not nice, but it works very well for a lot of patients.
[1:06:05] The other two groups are secondary trigeminal neuralgia — which is probably nerve injury for the most part — and idiopathic trigeminal neuralgia, which doesn't have the neurovascular conflict, no other answers, but presents in exactly the same way. It's one of those conditions where the hereditary factor might involve channelopathies. The sodium channels that we know are involved in pain reception — those families probably have an inherited channelopathy that may contribute to developing this condition later in life, usually around 50 to 60 years old.
[1:06:39] I think that covers it pretty well. But I would love to talk about things that happen much more commonly. I see so many patients with nerve injuries caused by wisdom teeth, dental extractions, implants, local anaesthetic, and root canal. We see a lot of patients with migraine. If you have disc entrapment in the jaw joint in the arthralgic group, you can get a shooting pain sometimes where the disc flicks forward — the only innervated part of the joint is the capsule next to the ligaments on the outside, so the inside of the joint is not innervated at all. And the other one is mealtime syndrome, where you've got a blockage in your submandibular gland or parotid gland, and you get this shooting neuralgic pain when the gland tries to salivate and the blockage causes shooting pain. All these things we need to rule out first before we diagnose the rarest orofacial pain condition. And it's a horrible pain, very impactful — much like cluster headaches, it can lead to suicidal ideation and patients just not coping very well.

[1:07:48] Dr. Linda Bluestein: Yeah, that's really interesting, and sounds absolutely awful. You mentioned mealtime pain, which is so interesting — I was thinking about people who have Eagle syndrome, where the styloids are elongated, which does happen more frequently in people with EDS and can be bilateral. I have a patient who recently had surgery and had an excellent result.

[1:08:12] Professor Tara Renton: Really?

[1:08:13] Dr. Linda Bluestein: Yes. Excellent. But she said she has had some first bite syndrome, which I'd never heard of.

[1:08:14] Professor Tara Renton: Yeah.

[1:08:22] Dr. Linda Bluestein: Do you know what that is?

[1:08:23] Professor Tara Renton: First bite syndrome is usually related to a blockage in the salivary glands somewhere. It may be that if she had a submandibular approach, maybe the gland had a bit of a nudge or something. I don't know exactly how they would have approached that region. It may be that the salivary gland is just a little unhappy at the moment.

[1:08:43] Dr. Linda Bluestein: Yeah, interesting. Well, thank you for sharing that. Okay, so as you know, we end every episode with a hypermobility hack. What hack do you have for us?

[1:08:54] Professor Tara Renton: Be aware that you don't respond to local anaesthetic, and ask your dentist to use infiltration dentistry. Be aware that you're more likely to suffer from pain, unfortunately, everywhere, including the orofacial region. But jaw joint pain is very easily preventable. If you're having prolonged dentistry, ask for a bite prop so you can rest with your mouth open and not stress your joint.

[1:09:21] Dr. Linda Bluestein: Well, I am so grateful to you for chatting with me today. And of course, I would like you to share with everyone where they can learn more about you.

[1:09:30] Professor Tara Renton: My name is Professor Tara Renton, based at King's College London. I'm very patient-centered. I've got two websites. One is orofacialpain.org.uk, and that's for patients with head and neck orofacial pain. A lot of what we've talked about is there. We are developing a special HSD/EDS page with Audrey's Health, and that will be updated at the end of this year or early next year when we update the orofacial pain website. The second website is trigeminalnerve.org.uk, which is centered around prevention and management of patients with nerve injuries. These injuries are preventable, and they're life-changing for patients — it's horrible for them.
I've also got a web app that you've kindly completed, which is called faceyourpain.org, and that's in its beta phase. We don't have data protection in the States, so technically it's not covered there, but it's data protected in Europe and the UK, which I think have equally high standards for data protection. If you're interested, it tells you about whether you might have sleep disorders, migraine, mood disorders, catastrophization, hypervigilance — all those things that might impact on your managing your own pain. And you get that fed back to you. Yeah, my two virtual children, my two websites and the web app.

[1:11:01] Dr. Linda Bluestein: That's wonderful. And you mentioned about people living with nerve injuries, and of course people like me who already have anxiety think, "Wait a minute—"

[1:11:11] Professor Tara Renton: Oh no.

[1:11:12] Dr. Linda Bluestein: I don't want a nerve injury. Is there anything that we can do to minimize the risk of that?

[1:11:21] Professor Tara Renton: Certainly most of the chronic post-surgical pain that was described by Stelzer and Kellett many years ago — you'll be familiar with that, a couple of anaesthetists — showed that the risk factors are anxiety, depression, sleep disorders, all those things we've talked about. You're more prone, if you have a neuropathic condition already, and you have EDS or HSD, you are more likely to develop chronic post-surgical neuropathic pain. So my one tip would be: only do what's necessary. My motto is, less is more. That's probably the hack. I've seen so many patients now having even very minimal cosmetic procedures, and they're ending up with neuropathic pain. So only go for interventions, injections, or surgery if it's evidence-based and absolutely necessary. That would be number one.

[1:12:17] Dr. Linda Bluestein: Yeah, when I first finished my anesthesia residency, or when I was younger, if I was offered a surgery for something, I always thought, "Oh, this is going to fix it." I was very much in favor of any kind of surgical intervention. And now I'm like, surgery as a last resort for my own body.

[1:12:39] Professor Tara Renton: Well, Katz and Salsa, going back 30 years, published on things like thoracotomy, breast surgery, limb amputation — phantom limb pain is neuropathic pain. They were talking 35 to 40% of patients getting chronic neuropathic pain after those procedures. Now, obviously they're procedures you have to have. But we've changed now. We know the other risk factors — not just patient risk factors, but minimal access surgery, hugely effective pain management. Anaesthetists like yourself are using local anaesthetics now, which you never used to in the past, because you are blocking that central sensitization so that when you're asleep, you're also getting local anaesthetic to minimize that central sensitization. So there are some really good strategies: minimal access, minimum time surgery, minimal tissue damage, and maximal perioperative pain management. A good surgeon will do that for you. They'll only do the surgery when it's necessary, and they'll work with a good anaesthetist.

[1:13:42] Dr. Linda Bluestein: Yeah. Preemptive analgesia is huge. For sure. Well, thank you so much again. It was a pleasure talking with you, and we will have to have you back to talk about orofacial pain, because it sounds like there's a whole additional set of things that we could share with people that would be valuable.

[1:14:02] Professor Tara Renton: Very happy to do that. Linda, it's been an absolute honor and pleasure. It's been lovely chatting to you. Thank you very much for the invitation.

[1:15:05] Dr. Linda Bluestein: Well, that was such a great conversation with Professor Tara Renton, and I can't wait to have her back to talk about orofacial pain, because there are obviously so many different things that can cause pain in these regions. I would encourage you to watch this episode on YouTube if you are able, because there were various points where she was pointing to different parts of her face.
[1:15:26] Thank you so much for listening to this week's episode of Bendy Bodies Podcast with the Hypermobility MD. I have lots of other resources including my newsletter, the Bendy Bulletin. Please check that out on Substack at hypermobilitymd.substack.com. You can help us spread the word about joint hypermobility, connective tissue disorders and related conditions by leaving a review and sharing the podcast. This really helps raise awareness about these complex conditions.
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