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Transcript — Airing Pain 131: Face Pain, Treatment & Management

What caus­es dif­fer­ent types of face pain and what treat­ment is available? 

In col­lab­o­ra­tion with UCLH Roy­al Nation­al ENT & East­man Den­tal Hos­pi­tals.

To lis­ten to the pro­gramme please click here.

In this episode of Air­ing Pain we cov­er facial pain in its many forms, what treat­ments are avail­able and how to cope bet­ter with your pain.

The way our face feels and how we move it is a mas­sive part of our iden­ti­ty. Feel­ing pain in the face, or not being able to use your face the way you want to, is not only a phys­i­cal bur­den on the per­son suf­fer­ing, but a heavy psy­cho­log­i­cal load to cope with as well.


Issues cov­ered in this pro­gramme include:

facial pain, unnec­es­sary den­tal treat­ments, tooth ache, face and iden­ti­ty, man­age­ment tech­niques, trigem­i­nal neu­ral­gia, neu­ro­path­ic pain, car­ba­mazepine, neu­ro­surgery, pain man­age­ment pro­grammes, psy­chol­o­gy and pain, tem­poro­mandibu­lar dis­or­der, burn­ing mouth syn­drome, per­sis­tent idio­path­ic facial pain, cen­tral sen­si­ti­sa­tion syn­drome, phys­io­ther­a­py, accep­tance & com­mit­ment therapy


This pro­gramme exists due to fund­ing from The Hos­pi­tal Sat­ur­day Fund, John Kirk­hope Young Endow­ment Fund, The Tilly­loss Trust & Swin­ton Pater­son Trust.


Paul Evans:

This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain and for those who care for us. I’m Paul Evans, and this edi­tion of air­ing pain is sup­port­ed with a grant from the Hos­pi­tal Sat­ur­day Fund.

Dr Joan­na Zakrzewska:

It’s record­ed that up to 20% of patients may have unnec­es­sary den­tal treat­ment. So, I mean, if you’ve tak­en out a tooth, that’s it. You’ve lost a tooth.

Rod­dy McMillan:

There’s, very often, not any out­ward­ly vis­i­ble signs so that some­body can look at some­body and say ‘oh they’ve got chron­ic pain of the face’. The amount of neg­a­tive impact that facial pain can have on patients can be extreme­ly high.

Susie Hold­er:

We could prob­a­bly man­age to get by if we weren’t using one arm or one hand or some­thing. You know there’s no way round it, you can’t real­ly get by with­out being able to eat. It’s dif­fi­cult to express your­self. I sup­pose it’s dif­fi­cult to be who you are if you can’t use your face.

Rachel Stovell:

I’m not going to promise peo­ple, and I’m not going to set up expec­ta­tions that I can’t actu­al­ly meet. But what I can say to them is that extra lev­el of suf­fer­ing that comes on top of deal­ing with those symp­toms, that is some­where that I can have some impact on.

Evans:

Our face is the por­tal, if you like, to our world: eat­ing, talk­ing, smil­ing, kiss­ing, breath­ing and much more. In this edi­tion of Air­ing Pain, we’ll be look­ing at con­di­tions that cause facial pain, and man­age­ment tech­niques and strate­gies that will help us live with it. Trigem­i­nal Neu­ral­gia is not a com­mon con­di­tion, but it is debil­i­tat­ing. Pro­fes­sor Joan­na Zakrzews­ka is a con­sul­tant in facial pain at the Roy­al Nation­al ENT and East­man Den­tal Hos­pi­tals in Lon­don, and she is inter­na­tion­al­ly rec­og­nized as one of the world’s lead­ing experts in Trigem­i­nal Neuralgia.

Zakrzews­ka:

Trigem­i­nal Neu­ral­gia is a facial pain, a very severe one-sided excru­ci­at­ing pain that comes in bursts. A sin­gle burst can last just for a few sec­onds to two min­utes, or you can have a burst that lasts quite long because there’s so many of them, a series of stabs that you actu­al­ly think that it’s last­ing much longer, and that can some­times go on for sev­er­al hours. But then you have a break, and that’s very, very impor­tant, and the break can be for any­thing from just min­utes to hours. You may only get two or three attacks a day, you may get no attacks and then you can go into peri­ods of what are called remis­sion, when there is no pain at all.

Then there are oth­er peri­ods [that] we call the relapse peri­od [when] the pain is brought on. It’s an elec­tric shock like pain brought on by light touch. So, it’s just gen­tly touch­ing your face, try­ing to shave, try­ing to wash your face, and it’s made worse obvi­ous­ly by eat­ing, drink­ing, talk­ing, and it is most­ly, except in 3% of patients, one side of the face only. Low­er part of the face most com­mon­ly, least like­ly in the top of the face, but it can be all three divi­sions of what’s called the Trigem­i­nal Nerve, and ini­tial­ly it often feels like a toothache because it often presents around the mouth and the nat­ur­al thing is to think I’ve got toothache and there­fore start your jour­ney on this con­di­tion by going to see your dentist.

The first thing the den­tist will do is exam­ine all the teeth to check whether there is poten­tial­ly a den­tal cause. They will often do X‑rays as well to check that there isn’t an abscess form­ing or some oth­er decay under a tooth. Now this is the dif­fi­cul­ty, some den­tists will then be in a dilem­ma because they can see that there is poten­tial­ly a den­tal prob­lem, but they’re not quite sure, some will go ahead and do den­tal work. That is, they may do root canal work, or they may even take the tooth out. And yet after those pro­ce­dures, the pain does­n’t set­tle and it’s very dif­fi­cult for den­tists to actu­al­ly rec­og­nize that it is Trigem­i­nal Neu­ral­gia, because it is rare, and it’s about teach­ing den­tists to ask the right ques­tions. Four or five ques­tions could be help­ful to try and diag­nose that, so again, the onus is also on the patient to try and record a his­to­ry as care­ful­ly as possible.

But it is this parox­ys­mal nature, that is the inter­mit­tent nature of the pain that is often a point­er to the fact that it isn’t a den­tal pain because den­tal pain tends to be con­stant and there the whole time, and par­tic­u­lar­ly if you touch a par­tic­u­lar tooth, it is like­ly to set off a den­tal pain. Where­as in a patient with Trigem­i­nal Neu­ral­gia, just touch­ing the gum around the teeth or the cheek area can set off an attack, and there­fore that does­n’t come from the teeth, but it is very dif­fi­cult because the Trigem­i­nal nerve sup­plies all our teeth, and every sin­gle tooth has a piece of Trigem­i­nal nerve in it. So that’s why it gets very con­fus­ing and some­times the den­tists have to hold off and wait a moment before they do any­thing dras­tic, because it’s record­ed that up to 20% of patients may have unnec­es­sary den­tal treat­ment and the prob­lem is that this den­tal treat­ment is often irre­versible. So, I mean, if you’ve tak­en out a tooth, that’s it, you’ve lost a tooth. Where­as if patients go to their GP, they might be giv­en var­i­ous drugs, but at least you can take the drugs off and start again. So, a den­tist has a big onus and we’re now try­ing also to devel­op a short ques­tion­naire, a screen­ing ques­tion­naire, that den­tists could ask their patients to try and see whether they can diag­nose Trigem­i­nal Neu­ral­gia, as opposed to a den­tal problem.

Evans:

So Trigem­i­nal Neu­ral­gia has been diag­nosed by the den­tist. What’s the treat­ment then?

Zakrzews­ka:

So, the first treat­ment is Car­ba­mazepine, a drug that has been rec­om­mend­ed by the NICE guide­lines, by our guide­lines and is taught every­where. Now den­tists can actu­al­ly pre­scribe Car­ba­mazepine, but it’s a very, as we call it, a black drug in the States and it’s a dan­ger­ous drug to use, dif­fi­cult to use. So, if you’re not used to using [Car­ba­mazepine], it’s much bet­ter that the GP pre­scribes it first. So, what hap­pens in good com­mu­ni­ties is that the den­tist will write to the GP and say ‘I think this is Trigem­i­nal Neu­ral­gia, I think the treat­ment is Car­ba­mazepine,’ and leave it to the GP to start the first dosages. And the NICE guide­lines say use Car­ba­mazepine. If Car­ba­mazepine fails, either because [the patient] does­n’t respond, which is unusu­al, or [because] they have severe side effects, then they should be referred to the sec­ondary care sec­tor. The big dilem­ma is who to and how to do that refer­ral. But in the first instance, Car­ba­mazepine can act as a diag­nos­tic drug, and only a small dose of it is suf­fi­cient to real­ly turn that pain off in those first few weeks or months of the pain. So, we often call it a diag­nos­tic drug.

Evans:

So, basi­cal­ly, if the Car­ba­mazepine works, it’s Trigem­i­nal Neu­ral­gia, if it does­n’t work, it’s some­thing else. What else could it be?

Zakrzews­ka:

It could be some oth­er form of neu­ro­path­ic pain, nerve injury pain, pos­si­bly relat­ed to hav­ing had den­tal treat­ment, or an infec­tion post-shin­gles or due to trau­ma to the face. So, one has to then start look­ing at oth­er caus­es for it, and what we do encour­age is that if you can’t find a cause, then do refer [the patient] to the sec­ondary sec­tor. If you refer to den­tal schools, then we can get an opin­ion from oral physi­cians who are well skilled to rec­og­nize Trigem­i­nal Neu­ral­gia and oth­er types of facial pain. We also have the back-up that we have restora­tive den­tists who are skilled in review­ing for rare caus­es of den­tal pain, because the one that’s most dif­fi­cult to dif­fer­en­ti­ate is, in fact, what we call cracked tooth — where the tooth has a crack in it- and every time you bite on it, you get pain. But here, the pain occurs on release of the tooth from bit­ing. So, in Trigem­i­nal Neu­ral­gia it’s that very first touch that sets off the pain, and that’s a dif­fi­cult one to diag­nose. Some den­tists in pri­ma­ry care may not find that because it’s quite sub­tle. So, if in doubt, we sug­gest refer­ral in for sec­ond opinions.

Evans:

Is Trigem­i­nal Neu­ral­gia cur­able or is it just manageable?

Zakrzews­ka:

That’s a very dif­fi­cult ques­tion to [answer], whether it’s cur­able or not. Some patients will feel that it is cur­able, but I think in gen­er­al it’s a long-term con­di­tion that can be man­aged very effec­tive­ly. So, when we have just done a long-term cohort study, that is, we’ve fol­lowed patients up for a min­i­mum of six years, what we found was that just under 50% had under­gone neu­ro­surgery in order to get pain relief, the oth­ers had remained on med­ica­tion. And at the time of the sur­vey, 80% of patients were say­ing that they were in a good place and that they were rel­a­tive­ly pain free. Although quite a large per­cent­age of them had to be on drugs, so I would say it is a long-term con­di­tion, but it is man­age­able and prob­a­bly more man­age­able than oth­er chron­ic pains and some patients who under­go major neu­ro­surgery can be total­ly pain free, off all med­ica­tion and no need to see us anymore.

Evans:

OK, you brought up neu­ro­surgery. Where in the treat­ment path would that come?

Zakrzews­ka:

So, neu­ro­surgery is obvi­ous­ly a com­plex set of pro­ce­dures, and patients need to be pre­pared for it. Now what we sug­gest in our unit and in our guide­lines, is that all patients, once they’ve been diag­nosed, we’re sure about the diag­no­sis and we call this phe­no­typ­ing, and we have done an MRI scan because every patient with Trigem­i­nal Neu­ral­gia should have a scan. Once we have both of these, we do a joint clin­ic. That is, I am present, plus a neu­ro­sur­geon and togeth­er with the patient and their spouse or their sig­nif­i­cant oth­er, we dis­cuss the treat­ment, so we will look at the scans. The sur­geons will pro­pose what poten­tial surg­eries are avail­able giv­en the med­ical his­to­ry as well, because that will influ­ence the choice, and what drugs are avail­able. At that con­sul­ta­tion, patients can either decide ‘I want surgery’ and which type of surgery, and can be imme­di­ate­ly put on wait­ing lists or even have surgery fair­ly quick­ly if they’re in des­per­ate pain, or they can opt to stay on medication.

But the door is always open, so the moment they get more severe pain and they decide they can’t cope with the drugs any­more because either the drugs are no longer work­ing or the side effects are intol­er­a­ble, they can opt to have surgery because they’re known to the neu­ro­sur­geons and they can have their surgery fair­ly quick­ly. So, the decid­ing fac­tors are lack of effi­ca­cy of a vari­ety of drugs, because I will have tried sev­er­al drugs, and tol­er­a­bil­i­ty. Tol­er­a­bil­i­ty is a major, major prob­lem, patients [can] feel cog­ni­tive­ly impaired, they can’t think prop­er­ly, they can’t find their words, they have mem­o­ry loss. They get very tired [and] fall asleep at the drop of a hat. They can get unsteady on their feet, they can have dou­ble vision, they can start to fall over, so those are side effects that we rec­og­nize in all these patients, and again, we’ve shown this by hav­ing patients doing com­put­er pro­grams and tests. This is an indi­ca­tor for neurosurgery.

So, neu­ro­surgery is done, most­ly now by neu­ro­sur­geons, who are par­tic­u­lar­ly skilled in work­ing in what we call the pos­te­ri­or fos­sa, that is, in the head rather than, say, on the spine. So, the most effec­tive pro­ce­dure is a Microvas­cu­lar Decom­pres­sion, which is a big neu­ro­sur­gi­cal pro­ce­dure because the neu­ro­sur­geons have to enter the skull. They do a small inci­sion behind the ear, and they get right inside the skull, not into the brain, and they look for the ves­sel. There’s a big blood ves­sel that press­es on the nerve, and that there­fore caus­es the loss of insu­la­tion between dif­fer­ent type of fibers and allows for this crosstalk, between light touch and sharp pain. And so, they move this ves­sel out of the way, and maybe sev­er­al ves­sels, there may be veins, but often it’s a very big large artery which they have to do very del­i­cate­ly, because if you touch that one, you’ve got a stroke or even death. Then close every­thing up very tight­ly, so every­thing is sealed again, and the cere­brospinal flu­id (CSF), the CSF, is con­tained again with­in the brain. Now that gives the best option, 70% of patients will be total­ly pain free at ten  years and off their med­ica­tions. But there is still this 30%, side effects are obvi­ous­ly [a risk], there is always a risk of death, but it is very low indeed, 0.1%, and the main [risk]  is this leak of CSF flu­id, but that can be mend­ed. There can some­times be loss of hear­ing, which is often a tem­po­rary loss of hear­ing, not per­ma­nent, but it is a big pro­ce­dure. Patients stay in the hos­pi­tal for three days and it takes up to six weeks to recover.

Now patients who are not fit enough to have the oper­a­tion or feel reluc­tant to have a big oper­a­tion can have small­er pro­ce­dures done, which are done under a short-act­ing gen­er­al anes­thet­ic where a nee­dle is passed through the cheek into what’s called the Gasser­ian Gan­glion. This is a point at which all the three major branch­es of the Trigem­i­nal nerve con­gre­gate togeth­er. They put the nee­dle in, they do X‑rays to check that the nee­dle is in the Gan­glion, and then they can do a vari­ety of three  dif­fer­ent things and it depends which one the sur­geon choos­es. They can heat it by putting an elec­tri­cal cur­rent through it, or they can fill that Gan­glion with glyc­erol, a tox­ic sub­stance. Or they can actu­al­ly com­press it with a lit­tle bal­loon; and all those three there­fore cause destruc­tion, so the patient will feel sen­so­ry change, that is, that side of the face might be numb, and it’s unpre­dictable. So, you don’t know when it’s going to be numb and how much numb­ness. It can be just one lit­tle area of the face, or it can be the whole side of the face, and that does­n’t give as good a result. We’re talk­ing about 50% of patients hav­ing relief for five years, up to five years.  These pro­ce­dures can be repeat­ed time and time again, but the risk of caus­ing per­ma­nent sen­so­ry loss increas­es and you can get what we call Anes­the­sia Dolorosa.

The final treat­ment is the Gam­ma knife, or what is more gen­er­al­ly known as Stereo­tac­tic Radio­surgery. Gam­ma Knife is the trade name and this is the least inva­sive, because all you have  to have is four  pins put under local anes­thet­ic just to sta­bi­lize a hel­met that is put on the head. And then you’re in [some­thing] sim­i­lar to a scan­ner, and radi­a­tion is pro­ject­ed onto the nerve in the place where we think the main source of the pain is. Now this treat­ment can take one month up to six months to work, so it’s not an imme­di­ate result. With the oth­er pro­ce­dures you wake up from your anes­thet­ic and you’re pain free, so this one takes a lit­tle bit longer to do, but is avail­able to every sin­gle patient. There’s vir­tu­al­ly-except if you’ve got a pace­mak­er or some met­al with­in you, when you can’t put some­body into a scan­ner, that one is avail­able to everybody.

So, there are a lot of sur­gi­cal options which can be repeat­ed and patients are warned that they can have this pro­ce­dure again because the big prob­lem with Trigem­i­nal Neu­ral­gia is its total unpre­dictabil­i­ty, and that’s what patients live with, the fear of pain [return­ing], and often iso­la­tion because they’re on their own. They haven’t met any­body with it and that’s why we also run a psy­chol­o­gy pro­gram specif­i­cal­ly for these patients. We have a pain man­age­ment pro­gram with our psy­chol­o­gists and our phys­io­ther­a­pists, and we teach and make patients aware of how to man­age flare-ups, how to meet each oth­er and how they can use things like med­i­ta­tion, mind­ful­ness. The first thing we do is rec­om­mend that they go to web­sites to help them with that such as www.my.livewellwithpain.co.uk, a very use­ful web­site for them to have.

Evans:

Isn’t it strange how a print­er would choose to do its main­te­nance tasks just when you least expect it. That was Pro­fes­sor Joan­na Zakrzews­ka and I’ll give you the address of the my.livewellwithpain.co.uk web­site at the end of this edi­tion of Air­ing Pain. Susie Hold­er is a clin­i­cal psy­chol­o­gist work­ing with­in that facial pain team at the Roy­al Nation­al ENT and East­man Den­tal Hos­pi­tals in London.

Hold­er:

The psy­chol­o­gist role in the facial pain team is about rec­og­niz­ing and acknowl­edg­ing the impact that facial pain has on peo­ple. Facial pain can feel real­ly threat­en­ing because it impacts on your vital func­tions, the things that you need to be doing every day, like com­mu­ni­cat­ing, eat­ing, inti­ma­cy, and it’s real­ly impor­tant that we get to grips with what the impact is on them and also think about what they can be doing dif­fer­ent­ly. Learn­ing to man­age and learn skills to be able to man­age more effec­tive­ly on a day-to-day basis.

Evans:

For a patient, it must be a fair­ly dif­fi­cult thing to get your head around: [that you’re] going to a doc­tor to have your pain cured. Yet you’ll get to see a psy­chol­o­gist: a head doctor.

Hold­er:

You’re right, and that’s real­ly dif­fi­cult, isn’t it, and a lot of patients can feel real­ly dis­tressed by that, and it is the way in which it’s intro­duced that’s real­ly impor­tant. So, one of the things that our team — our med­i­cine team — and facial pain team are real­ly good at doing — the doc­tor or den­tist that they see on the team — what they’re real­ly good at doing is actu­al­ly sug­gest­ing that this is real­ly hard to live with. This is real­ly dif­fi­cult. We under­stand the impact that this is hav­ing on you. So it’s not that we’re sug­gest­ing that this is made up in any way, that this is a fic­tion­al prob­lem. But this is real­ly look­ing at how hard this is and one of the things that we know, just like with oth­er chron­ic pain con­di­tions, is that peo­ple can expe­ri­ence things like anx­i­ety [and] depres­sion as a result of liv­ing with a long-term per­sis­tent con­di­tion.  And that’s true of any long-term con­di­tion, not just facial pain. But [we under­stand] that it brings dif­fi­cul­ty and the skills that we have to man­age those [symp­toms] may not be work­ing for them, and [the skills] might need look­ing at. [The skills] might need broad­en­ing out, and [patients] might need to learn dif­fer­ent skills to help to man­age that impact bet­ter on a day-to-day basis.

Evans:

We’ll explore some of those skills a lit­tle lat­er. Now, we’ve been focus­ing so far on Trigem­i­nal Neu­ral­gia, but not all facial pain is Trigem­i­nal Neu­ral­gia. In fact, com­pared to oth­er con­di­tions, it’s not very com­mon at all. Doc­tor Rod­dy McMil­lan is a con­sul­tant in oral med­i­cine and facial pain at the Roy­al Nation­al ENT and East­man Den­tal Hos­pi­tals in London.

McMil­lan:

The most com­mon one, by quite some way, is the Tem­poro­mandibu­lar Dis­or­ders, or TMD as we call it for short, which is basi­cal­ly pain around the jaw joint and the mus­cles that are asso­ci­at­ed with the jaw. So, that tends to be on the sides of the face but can radi­ate else­where, includ­ing into the ears and side of the neck, for instance, as well as pre­sent­ing with pain inside the mouth. The oth­er con­di­tions that we tend to man­age are most­ly relat­ed to some form of nerve wear and tear or nerve dam­age. One of the most com­mon ones that we see is called Burn­ing Mouth Syn­drome, which presents gen­er­al­ly towards the front part of the mouth. For instance, the tongue and the inside of the lips and the gums, and that is to do with wear and tear of the nerves, that’s what we call a neu­ro­path­ic pain con­di­tion, and that’s prob­a­bly one of the more com­mon ones that we will tend to see. We also see quite a mix­ture of nerve dam­age relat­ed pains or neu­ro­path­ic pains, par­tic­u­lar­ly affect­ing the teeth, and around that sort of area we have a con­di­tion that we see not uncom­mon­ly called Per­sis­tent Idio­path­ic Facial Pain. It used to be called Atyp­i­cal Facial Pain, and that’s actu­al­ly pret­ty com­mon, par­tic­u­lar­ly fol­low­ing den­tal treat­ments. Even rel­a­tive­ly innocu­ous den­tal treat­ments such as root canal treat­ment. We know that around about 5%, at least 5% of peo­ple who have had a per­fect­ly good root canal treat­ment con­duct­ed by their den­tist will have per­sis­tent dis­com­fort in and around the tooth fol­low­ing that pro­ce­dure. More obvi­ous types of neu­ro­path­ic pain includes those relat­ed to trau­ma dam­age such as peo­ple who’ve had surgery for can­cer or any oth­er types of surgery in and around the face or the mouth. Pro­ce­dures such as extrac­tions of teeth, par­tic­u­lar­ly low­er wis­dom teeth, is an exam­ple that can direct­ly lead to nerve dam­age, which can cause con­tin­u­ous or per­sis­tent pain fol­low­ing the procedure.

Evans:

How would some­body know that it was­n’t just pain from hav­ing the tooth out?

McMil­lan:

If we’re deal­ing with pain fol­low­ing a den­tal extrac­tion, if there’s direct nerve injury asso­ci­at­ed with that, such as in the case of a low­er third molar wis­dom tooth, then quite often the area sup­plied by the nerve in ques­tion may be tin­gling or numb fol­low­ing the pro­ce­dure. You would nor­mal­ly expect it to be quite numb imme­di­ate­ly fol­low­ing the pro­ce­dure if you’ve had local anes­thet­ic there, but the numb­ness of the tin­gling can per­sist. That does­n’t always hap­pen, but that cer­tain­ly would be a sug­ges­tion that there’s been some — at least — bruis­ing, not dam­age to the nerve itself. Fol­low­ing a den­tal extrac­tion peo­ple expect it to be a bit sore for a few days or a cou­ple of weeks after­wards, and gen­er­al­ly as a rule of thumb, peo­ple that have nerve dam­age pain relat­ing to den­tal extrac­tions, despite the fact that area is healed up, they would have per­sis­tent numb­ness and tin­gling poten­tial­ly. In the case of peo­ple with neu­ro­path­ic pain, we would tend to expect dis­com­fort to per­sist in that area fol­low­ing the heal­ing process. So as a rule of thumb, the fig­ure of three months is used, in real­i­ty most of these peo­ple will be aware of per­sis­tent dis­com­fort much soon­er than that. So, these patients may have a com­bi­na­tion of numb­ness or altered sen­sa­tion, such as when they touch their face or their lip or their tongue it’s per­haps tingly com­bined with this per­sis­tent dis­com­fort or pain on top of that, it can present with­out numb­ness or tin­gling, and in the case of the Idio­path­ic facial pain that we men­tioned pre­vi­ous­ly. They don’t always have numb­ness or tin­gling or altered sen­sa­tion in that region after­wards. They may just have dis­com­fort, which is per­sis­tent. So, it’s either there all the time or it tends to be present most of the time.

Evans:

What is the treat­ment for that?

McMil­lan:

As a rule of thumb, most of the con­di­tions in facial pain are neu­ro­path­ic or relat­ed to some form of nerve dam­age or nerve injury, with the excep­tion of Tem­poro­mandibu­lar dis­or­ders, which tend to be more mus­cu­loskele­tal, joint relat­ed or mus­cle relat­ed. The man­age­ment of the neu­ro­path­ic pain con­di­tions affect­ing the face tend to be quite sim­i­lar. The excep­tion of course is Trigem­i­nal Neu­ral­gia, which has quite a unique set of med­ica­tion options, but in terms of the oth­er neu­ro­path­ic con­di­tions that we deal with, such as per­sis­tent idio­path­ic facial pain or trigem­i­nal neu­ro­path­ic pain, which is the one that we tend to see fol­low­ing sur­gi­cal dam­age to the nerves for instance, [they are quite similar].

The main part of the ini­tial con­sul­ta­tion that we tend to do is take your his­to­ry. The impor­tant thing is lis­ten­ing to the patient’s sto­ry, the patient’s- what we call the patient’s nar­ra­tive, so actu­al­ly find­ing out from the patient what has hap­pened. Lis­ten­ing to how they’re describ­ing their pain, also actu­al­ly quite impor­tant­ly, lis­ten­ing to what they think may be caus­ing the pain as well, because very often the assump­tions from clin­i­cians may be one thing, but the patien­t’s beliefs, and indeed their expec­ta­tions, can be com­plete­ly dif­fer­ent, so that’s an impor­tant point. So, part of the process may be that we will send patients for scans; most of the time we don’t need to send them for X‑rays, so things like den­tal X‑rays have usu­al­ly been con­duct­ed by the refer­ring clin­i­cian, whether that be a den­tist, an oral sur­geon, or a neu­rol­o­gist, or who­ev­er it may be. It’s impor­tant to note that scans don’t actu­al­ly diag­nose these pain con­di­tions, they just help to rule out oth­er poten­tial caus­es for the symptoms.

In the case of the pan­dem­ic, for sev­er­al months actu­al­ly, we were not able to see patients face-to-face for facial pain con­di­tions, and we found that the accu­ra­cy of our diag­no­sis using video­con­fer­ence or tele­phone was actu­al­ly extreme­ly good. The impor­tant thing to get across to patients is that even though we can see no dis­ease process as-such, like an inflam­ma­tion or an infec­tion, or a frac­ture or den­tal prob­lem or what­ev­er it may be, that does­n’t mean to say the pain isn’t real.  And [it] is cer­tain­ly well rec­og­nized that in the major­i­ty of the con­di­tions that we treat in the face, we can’t find an under­ly­ing iden­ti­fi­able focus of a prob­lem that will account for the pain. The his­to­ry alone is the impor­tant fea­ture here in terms of try­ing to get an accu­rate diag­no­sis, and real­ly lis­ten­ing to the patient’s sto­ry is absolute­ly cru­cial in this situation.

Evans:

Now you men­tioned Tem­poro­mandibu­lar dis­or­der. That’s not a nerve pain.

McMil­lan:

It’s a col­lec­tion of dif­fer­ent con­di­tions which effec­tive­ly result in dys­func­tion or impaired func­tion of the jaw, the jaw joints and the jaw mus­cles and or pain of the jaw, joint, and jaw mus­cles. The major­i­ty of these patients do not have an under­ly­ing arthrit­ic process with the jaw, that can hap­pen, and we do see that from time to time, but it’s rel­a­tive­ly rare for patients to devel­op arthrit­ic-relat­ed TMDs, we call it tem­poro­mandibu­lar dis­or­der. Those patients will tend to present more with func­tion­al prob­lems such as they say ‘I can’t open my mouth wide enough to eat my din­ner or open my mouth, and it jams open and I have to wig­gle it back into posi­tion or [there’s] a click­ing of the joints,’ etc. The major­i­ty of patients that we see [who don’t] have a sig­nif­i­cant under­ly­ing arthrit­ic process or mechan­i­cal prob­lem with the jaw, will tend to be in more pain, affect­ing the jaw joints and the jaw muscles.

The research would sug­gest about 1/3 of peo­ple devel­op this pain con­di­tion dur­ing their life­time and the con­sen­sus would tend to sug­gest that for the major­i­ty of those patients it will not be relat­ed to trau­mat­ic events such as den­tal treat­ment or bash to the face or what­ev­er it may be. It tends to come on fair­ly insid­i­ous­ly and be asso­ci­at­ed very strong­ly with stress­ful peri­ods in life, and as we men­tioned ear­li­er, this is not con­sid­ered to be a neu­ro­path­ic pain con­di­tion. It’s actu­al­ly a lot more com­pli­cat­ed than that, so it’s what we would call a Cen­tral Sen­si­ti­za­tion Pain Syn­drome. To try to explain that in rea­son­ably sim­ple terms, in the areas of the brain that process pain, there’s a num­ber of dif­fer­ent areas that often over­lap with oth­er fea­tures in the brain, such as the areas that would deal with stress, anx­i­ety, depres­sion, these kind of neg­a­tive emo­tion­al aspects of things. What we sus­pect hap­pens with TMD and at least in the mus­cu­loskele­tal or the mus­cle relat­ed pain con­di­tion, is that when peo­ple become stressed or anx­ious, it sen­si­tizes the pain cen­ters in the brain, and then sig­nals will come down the nerves into the mus­cles and joints of the face and release chem­i­cals in those areas which lead to the mus­cles and joints becom­ing tight, sore, sen­si­tive [and] painful. For 80% of those patients the prob­lem will not last for a huge amount of time. It may last for a few days or a few weeks, then it will usu­al­ly set­tle down.

The 20% of peo­ple who have what we call chron­ic TMD or long-term issues with the pain where it’s either there all the time or it comes and goes very reg­u­lar­ly and is more of a prob­lem. Those patients, by and large, not always but usu­al­ly, will have oth­er risk fac­tors in the back­ground: rea­sons why this sen­si­ti­za­tion process has­n’t switched off. Top of the list are con­di­tions that are painful chron­ic pains else­where in the body. One con­di­tion which is at least phys­i­o­log­i­cal­ly almost the same as TMD is Fibromyal­gia, which is quite com­mon, a wide­spread mus­cu­loskele­tal cen­tral sen­si­ti­za­tion pain syn­drome, oth­er con­di­tions we know are asso­ci­at­ed are things like anx­i­ety, depres­sion, sleep­ing prob­lems which often come as a pack­age togeth­er and last but not least, would be headache con­di­tions, par­tic­u­lar­ly ten­sion type headache and migraines, which are again regard­ed as cen­tral sen­si­ti­za­tion pain syn­drome. So, it’s a very com­pli­cat­ed con­di­tion, and if some­body has chron­ic TMD, it’s not a con­di­tion [for which] we can say we’ll give you a treat­ment which will def­i­nite­ly make this dis­ap­pear or go away, and that’s true of more or less all of the con­di­tions that we see, but cer­tain­ly in terms of the man­age­ment of these patients, then that kind of dis­cus­sion is real­ly cru­cial. One of the areas that we do tend to focus on is the role of reg­u­lar exer­cise and phys­i­cal relax­ation activ­i­ties in the man­age­ment of chron­ic pain. We’re not very pre­scrip­tive in our ser­vice about what we rec­om­mend patients do, but if you speak to the phys­io­ther­a­pist, they will often say ‘I don’t care what you do as long as you move every day, and enjoy what you’re doing,’ and that’s real­ly crucial.

Evans:

Doc­tor Rod­dy McMil­lan, Con­sul­tant in oral med­i­cine and facial pain at the Roy­al Nation­al ENT and East­man Den­tal Hos­pi­tals in Lon­don. Well, Rachel Stovell is a spe­cial­ist phys­io­ther­a­pist in the facial pain team.

Rachel Stovell:

We do spend time explain­ing pain, explain­ing how pain works, explain­ing some of the neu­ro­science behind pain, just to help peo­ple to appre­ci­ate that pain is a bit more com­pli­cat­ed than ‘if I find the bit that’s bro­ken and fix it, it will all go away.’  Does­n’t quite work like that with chron­ic pain, and also then help­ing them to — along­side our psy­chol­o­gists — rec­og­nize how we might need to work with nor­mal behav­iors and body parts and gain activ­i­ty. But do it in a way that is recog­nis­ing this sen­si­tiv­i­ty, but recog­nis­ing every­thing else that influ­ences [the pain].  So along­side them we will work with per­haps move­ment and exer­cise, exer­cise — in this instance — of the face and then restor­ing their func­tion­al abil­i­ty. It’s all very well to exer­cise your face, to open and close and things, but that’s not help­ful if it does­n’t mean that you’re able to talk more, eat more and be inti­mate again. You know, those are the things we want to do, but you might have to start some­body off with gen­tle expo­sure to just mov­ing that part of the body in a real­ly sim­ple way before you do the com­plex behav­iors of eat, chew and talk.

Evans:

It seems to me that if I have pain in my mouth or my jaw, if I’m eat­ing or chew­ing some­thing hard, that will make it hurt more. So, I stopped doing that. I start drink­ing soup instead of chew­ing things, but that is not address­ing the problem.

Stovell:

It’s not, but I sup­pose with per­sis­tent pain con­di­tions, it’s dif­fi­cult to address the prob­lem because we haven’t found a way of being able to get that ner­vous sys­tem to not be sen­si­tive.  But what we know with all of these con­di­tions is that if we adapt the way that we use our body part that’s painful in such a way that we’re not doing what it’s designed for, then we might have the prob­lem of get­ting oth­er issues.  The area becomes weak, it becomes stiffer, it becomes out of con­di­tion and on top of already hav­ing pain and sen­si­tiv­i­ty, that’s not help­ful and it prob­a­bly main­tains some of that sen­si­tiv­i­ty because we’re not per­haps expos­ing the area to nor­mal stim­uli and there­fore we’re going to get per­haps a big­ger response to some­thing than we would do nor­mal­ly, because [that body part is]  now being avoid­ed. So, yeah, one of the things that we pro­mote and encour­age in our work is this idea of explor­ing and work­ing with that body part, par­tic­u­lar­ly the face in facial pain to allow for us to do what’s nor­mal in the pres­ence of pain. With the under­stand­ing that you’re not harm­ing your­self, that you’re not actu­al­ly cre­at­ing dam­age or harm, that you’re using mus­cles, joints, lig­a­ments, bones nor­mal­ly and that actu­al­ly they need to do that to stay healthy.

Evans:

That’s Rachel Sto­vall, spe­cial­ist phys­io­ther­a­pist in the facial pain team at the Roy­al Nation­al ENT and East­man Den­tal hos­pi­tals in Lon­don. Ear­li­er we heard from her col­league psy­chol­o­gist Susie Hold­er that skills can be learned to help the patient self-man­age their pain. The ther­a­py comes under the acronym ACT and it’s suit­able for peo­ple with all kinds of chron­ic pain, not just facial pain.

Hold­er:

ACT is accep­tance and com­mit­ment ther­a­py. It comes out of cog­ni­tive behav­ior ther­a­py, so lots of peo­ple have heard about CBT, but it’s a slight­ly dif­fer­ent approach, and it incor­po­rates a num­ber of dif­fer­ent impor­tant mech­a­nisms that we use when we’re work­ing with patients, either in a group or in indi­vid­ual. So, those sorts of things that include things like accep­tance- actu­al­ly it’s quite dif­fi­cult word, accep­tance… yeah. Peo­ple find that a dif­fi­cult thing to digest. Often a doc­tor will say ‘you know you need to learn to accept this con­di­tion’ and that’s a hard thing. A dif­fi­cult mes­sage for peo­ple to hear. I actu­al­ly pre­fer the word will­ing­ness: ‘can I will­ing­ly live with these symp­toms?’ One of the prob­lems is that [when] liv­ing with any sort of long-term con­di­tion, you’ve got the symp­toms that you’re expe­ri­enc­ing, and that might be pain. Or it might be some­thing else for anoth­er con­di­tion, but on top of that comes a huge amount of dis­com­fort, dis­tress. The suf­fer­ing that comes on top.

What we say to patients as psy­chol­o­gists is ‘what I can’t do is I can’t cure.’ I can’t take away that pain and that’s real­ly hard to digest, isn’t it? That’s real­ly hard to accept, that real­ly they’ve come to our ser­vice because they’re hop­ing that we’re going to get rid of their con­di­tion, to cure it. But the real­i­ty is, they’re going to need to learn to live with it. How could they live in a bet­ter way, in the pres­ence of those symp­toms? So, I can’t get rid of those symp­toms. I’m not going to promise peo­ple, and I’m not going to set up expec­ta­tions that I can’t actu­al­ly meet. But what I can say to them is that extra lev­el of suf­fer­ing that comes on top of deal­ing with those symp­toms, that is some­where that I can have some impact on. You may not want those symp­toms of course, you don’t want those symp­toms, but actu­al­ly, could we approach it slight­ly dif­fer­ent­ly? Could you come on a jour­ney with me and I could help you to learn some skills to help you to man­age it in a dif­fer­ent way on a day-to-day basis?

Evans:

Some peo­ple say that you need to stop look­ing for that mag­ic cure, that gold­en bul­let if you like. And I’m speak­ing to some­body who said ‘actu­al­ly I don’t have a pain con­di­tion any­more, the pain is there, but this is me.’

Hold­er:

One thing that can hap­pen liv­ing with any sort of long-term con­di­tion is that life can nar­row. We can spend so much time and ener­gy, caught up in look­ing for those cures. What can hap­pen is that we stop doing the things that are impor­tant to us and that over time peo­ple can find that life can get very nar­row. So yeah, can we learn to live along­side pain? ‘Yes, pain’s there. I don’t real­ly want it to be there. I don’t like it. I’d love to get rid of it, but it prob­a­bly isn’t going to hap­pen. So can I find a way of liv­ing with it, but still doing the things mov­ing towards the val­ues, doing the things that are real­ly impor­tant to me in the pres­ence of pain?’

Evans:

That, I guess, is the accep­tance bit. Now it’s com­mit­ment, that I strug­gle with.

Hold­er:

ACT is real­ly all about chang­ing behav­ior and doing things dif­fer­ent­ly and not being pushed around by our thoughts and feel­ings and our pain as well. The things that get in the way of us doing the things that are impor­tant to us. Part of the pas­sage of this sort of treat­ment is rec­og­niz­ing what our goals are, but set­ting up steps towards goals, so small sus­tain­able goals, that are in line with our val­ues and so it’s real­ly all about chang­ing our behav­iors, doing the things that are impor­tant to us. You know, it might be that you want to social­ize more, so your goal might be to go to a cof­fee shop and meet some­body, COVID per­mit­ting. So, we’re ask­ing peo­ple to com­mit to goals. OK, now we also know that com­mit­ment is real­ly dif­fi­cult. Yeah, if you ever try to change a behav­ior, we all know how dif­fi­cult that can be. It can take weeks, months to actu­al­ly put a behav­ior in place that actu­al­ly becomes auto­mat­ic that we don’t have to think about any­more, and some­times peo­ple com­mit to some­thing and then it falls off, and what we need to think about is how can we recom­mit. ‘It’s OK that I’ve stopped doing it. Can I recom­mit again and again and again and again to doing the behav­iors that are mov­ing towards the goals that I have, and are in line with the val­ues that I have?’ That’s what’s impor­tant to me going forward.

Evans:

It’s avoid­ing a blame game if you like, ‘well, I failed, I failed again.’

Hold­er:

Absolute­ly, so one of the big ele­ments is also work­ing on those thoughts and feel­ings, so we all have a ten­den­cy to judge and crit­i­cise our­selves, that is a nor­mal part of being a human being. That’s what we do all the time. But if we get caught up in those feel­ings, then what tends to hap­pen is that impacts on what we do, or ‘I’m not going to do that because I’m not going to do that well. I’m not going to do that Pain Con­cern pod­cast, because it’s just not going to work out for me.’ You know, I could have called you, could­n’t I?  And said ‘actu­al­ly, I don’t think I [can] do this,’ but I chose to recog­nise [the] anx­i­ety that it pro­vokes, [which] shows that despite that anx­i­ety I’m going to do it any­way. So, one of the impor­tant things we do is recog­nise that crit­i­cis­ing — that ten­den­cy to crit­i­cise and judge our­selves — and learn tech­niques to unhook from that.

So, we use var­i­ous dif­fer­ent ideas to help peo­ple take a step back from what they’re think­ing rather than get­ting involved with it and caught up with it. Wor­ry­ing about what we’ve done in the past or wor­ry­ing about what could be in the future, or beliefs that we have about our­selves and learn to unhook from those ideas, and that’s one of the key skills that psy­chol­o­gists have for work­ing with peo­ple; and we’re look­ing at open­ing up life again, engag­ing with things, whilst recog­nis­ing that there’s stuff that comes up that gets in the way and we need to be aware of that. We need to observe that we may need to use that infor­ma­tion to help us to over­come some of the obsta­cles that get in the way.

Evans:

Clin­i­cal psy­chol­o­gist Susie Hold­er. Well before we go on, I just need to remind you that whilst we in Pain Con­cern believe infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judg­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well-being. They are the only peo­ple who know you and your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf. Do check out Pain Concern’s web­site at painconcern.org.uk where you can down­load all edi­tions of Air­ing Pain and find a wealth of sup­port and infor­ma­tion mate­r­i­al about liv­ing with and man­ag­ing chron­ic pain and there you can find details of how to order edi­tion num­ber 77 of our Pain Mat­ters Mag­a­zine, which is guest edit­ed by the facial pain team at the East­man Den­tal Hos­pi­tal in Lon­don who are fea­tured in this edi­tion of Air­ing Pain. The ‘my live well with pain’ web­site rec­om­mend­ed by Pro­fes­sor Zakrzews­ki can be found at: my.livewellwithpain.co.uk., that’s: my.livewellwithpain.co.uk, and if you or some­one you know has Trigem­i­nal Neu­ral­gia, the Trigem­i­nal Neu­ral­gia Asso­ci­a­tion UK web­site is: tna.org.uk.

Well to end this edi­tion of Air­ing Pain, Susie Hold­er was talk­ing about obsta­cles to liv­ing bet­ter with pain. As we record this edi­tion of Air­ing Pain just before Christ­mas 2021, there could­n’t be a bet­ter time to talk about obsta­cles, as the Omi­cron vari­ant of the Coro­n­avirus is scup­per­ing any chance of return­ing to what we used to call a nor­mal way of life.

Hold­er:

Obvi­ous­ly, we did all our work face-to-face pri­or to COVID and we’ve had to change very quick­ly the way in which we work. It’s been great that we’ve been able to offer peo­ple tele­phone con­sul­ta­tions, but also video con­sul­ta­tions. So, it’s real­ly changed the way that we work. What I’ve found is that, in a sense, what’s hap­pen­ing is I’m actu­al­ly [vir­tu­al­ly] going into some­body’s house in a sense. That when I make a phone call [or] when I make a video call, I’m in their own envi­ron­ment. It has some advan­tages [because] they’re mak­ing changes or think­ing about mak­ing changes in their own envi­ron­ment. But I’m also pick­ing up on lots of things that, you know, some­body is not just deal­ing with facial pain, but they’re also deal­ing with the dif­fi­cul­ty, or per­haps lone­li­ness or being on their own for many peo­ple, or feel­ing cut off from oth­er peo­ple with sim­i­lar sorts of con­di­tions as well.

We run an about face pain man­age­ment pro­gram for facial pain that’s been real­ly help­ful as an online plat­form. At least you’ll be able to have that inter­ac­tion with oth­er peo­ple who’ve got sim­i­lar con­di­tions to you, so that’s been help­ful as well, but yeah. If you think about it, you know you’re deal­ing with facial pain, but you’re also deal­ing with a very threat­en­ing, fear­ful sit­u­a­tion. I do won­der whether that lev­el of threat and fear can also have an impact on the whole sys­tem and how we man­age our facial pain. But there’s so much you can do on a dai­ly basis. There’s so much you can do in the present moment, we can enjoy mak­ing our­selves a nice cup of tea, but we can actu­al­ly expe­ri­ence it. We can actu­al­ly be in the present moment with it. We can use some of those mind­ful­ness skills that we’ve learned togeth­er, to be in the present moment and actu­al­ly enjoy every­day activ­i­ties. Some­thing as sim­ple as putting hand cream on. We can all do that. Some­thing very sim­ple. ‘What’s that like? What’s the feel­ing like of that cream on my hand? What does it feel like when I spread it out? What does it smell like? What’s the tex­ture?’ All of that actu­al­ly being in the present moment rather than get­ting caught up with the wor­ries about the past, or per­haps fears about the future, and a lot of the skills that we talk about in psy­chol­o­gy are trans­fer­able to lots of dif­fer­ent types of sit­u­a­tions as well.

Evans:

If you had just one tip to give some­body, not just with facial pain, [but] with chron­ic pain, to get them through how­ev­er long this COVID peri­od lasts, just to help them get through, what would you say?

Hold­er:

One of the things that I keep hang­ing onto is ‘this will pass, this will pass.’ We will learn to live with it. We will have learned a lot about our­selves in the process. I think that we need to show our­selves self-com­pas­sion and look after our­selves as well with­in this and recog­nise ‘yeah, this is dif­fi­cult. This is hard, but how can I best look after myself with­in this?’

END

Tran­scribed by Owen Elias, edit­ed by Geor­gia Gaffney


Con­trib­u­tors

  • Dr Joan­na Zakrzews­ka, con­sul­tant in oral med­i­cine spe­cial­is­ing in trigem­i­nal neu­ral­gia at the Depart­ment or Oral Med­i­cine and Facial Pain at the UCLH NHS Foun­da­tion Trust.
  • Susie Hold­er, clin­i­cal psy­chol­o­gist on the facial pain team at the Roy­al ENT and East­man Den­tal Hos­pi­tals, UCLH NHS Foun­da­tion Trust.
  • Dr Rod­dy McMil­lan, con­sul­tant in oral med­i­cine and facial pain at the Roy­al ENT and East­man Den­tal Hos­pi­tals, UCLH NHS Foun­da­tion Trust.

More Infor­ma­tion:

https://painconcern.org.uk/cordless-car-vacuum-cleaner-eraclean-best-handheld-vacuum/