Facing dental fears, whether I like it or not!

Content note: Discussion of dental fear, with descriptions of bad experiences with dental treatment.

Image snagged from Dental Fear Central. Click through for the source.

One of my personal worst fears seems to have come true: it looks like I probably have an abscessed molar, and can’t keep putting off having some dental work done. Last night, I went ahead and e-mailed a nearby dental anesthetic clinic to try to set an appointment (yes, luckily there is one!), and have been spending the morning so far avoiding my e-mail and having anxiety attacks thinking about it.

I have never had an abscess before, myself, but seem to have pretty much all the symptoms, including a migraine-level headache and earache and other nerve weirdness on that side of my face. I’ve always been afraid of them, though, because my mom had a serious problem with them, and got very sick a lot and ended up losing a lot of teeth from it. The brushoff and pass-around that’s too common in the US, AFAICT, did not help: “You’ve got an infection, go get some antibiotics and pain relief from your doctor before I can do any work on it!” “This is a dental problem, go and get antibiotics and pain relief from the dentist!”, etc. (The pain relief rarely happened at all, and there was often a couple weeks’ delay, with multiple trips back and forth, in managing to get antibiotics.) Combined with often having trouble affording dental care, and also putting it off because of a history of bad experiences. But, she actually got another one during the (rather too) extended visit after the wedding, and didn’t run into any of that getting it treated here; the dentist down the street saw her the next day, and getting medications was no problem at all.  It was also much cheaper treatment, private, as mostly seems to be the case in the UK. This is not a major concern for us, thank goodness.

That tooth has tended to ache a lot anyway–more on that later–but it got bad enough over the past week or so that I started looking at the very helpful Dental Fear Central site again, and making noises about needing to see about it. The past few days, the molars above it started getting in on the act, hopefully from referred pain since they are not in good shape either, and I started getting the swelling on that side of the jaw and feeling actively sick. Yesterday was bad enough that I couldn’t put if off any longer, which is a pretty good indication of the level of the problem. I haven’t been to the dentist at all in at least five years (again, really bad toothache but without the infection symptoms), and it was longer before that. One of the things I like about Dental Fear Central is that they are very open about the fact that an awful lot of people have anxiety going on thanks to past bad experiences. I refuse to call it “phobia”, myself, because it’s not irrational fears.

There are a variety of reasons I panic at the idea of dental care. First, there’s the sensory issues. As one dentist summed it up: “Loud sounds, lights, smells and sometimes touching can overwhelm a patient with Autism. This presents a special challenge for dental treatment because pretty much anything about dentistry involves these things.” Erm, yeah. There’s the baseline of overload there, which can create some extra anxiety with a history of nobody recognizing that these were real problems and assuming that meltdowns were some kind of temper tantrums. But, that’s just the beginning here.

My enamel has always been really thin, with basically none on a few teeth. (Thank the celiac, and, as I only just found out, maybe also the hypermobility.) I had to get six baby teeth filled. Not only has this led to easily getting cavities, it makes my teeth extra-sensitive so that even cleanings have always been painful. All the fluoride treatments in the world are not going to help with that, and I’ve had an awful lot of extra ones that just gagged me.  My whole family, with a few notable exceptions, also has this problem, probably also from some combo of the same genetic factors. All but one of my grandparents had full dentures by the time I was born, in their early-mid 50s. My Mamaw still had all of hers but one at last check, and that one got knocked out when they were trying to entubate her for bypass surgery and couldn’t get her jaw unclenched. Granted, they used to be a lot quicker to pull teeth for anything more complicated than a small cavity, but yeah. My Papaw lost all of his, mostly to WWII-era Army dentistry, by his early 20s, which left him about as embarrassed about the dentures as you’d expect. I never ever saw him with them out. (I also think he’s one of the sources of the gluten sensitivity, yeah, and it’s easier to name the non-bendy relatives than the bendy ones. That’s autosomal dominant.)

Lots of lousy, crumbling teeth and bad dental experiences leading to anxiety and avoidance all around. Some of that may also have rubbed off. I know I got a lot more anxious watching my family deal with miserable dental problems, and the easy assumptions that they couldn’t possibly be taking care of their teeth properly. (Also cue snaggle-toothed hillbilly stereotypes…)

My enamel is even worse right now, having demineralized a lot with the celiac-related osteomalacia. Partly as an excuse, I was avoiding going to get (probably extensive) work done until they had time to remineralize more. They are at least improved to the point that I am no longer getting super-sensitive teeth with a nagging full mouth ache every time we get chilly, rainy weather (fun in Greater London!), but I was also afraid that fillings, etc., would have a harder time holding. It was also bad enough for a couple of years that I had a hard time taking care of my teeth as I would have liked, because it seriously hurt just brushing and flossing. But, yeah, I am even more concerned about the sensitivity factor now, and I am tempted to ask about the sealant that they’re using a lot on kids now, for maybe an extra protective layer.

Not surprisingly, this is also a cosmetic concern, so that I’m glad my teeth naturally don’t show much. They have never been very white, and the only thing that might make the thin enamel whiter is something like bonding. The dentin shows through a lot. They are also very, very prone to staining, and I haven’t had a professional cleaning in almost 20 years, when my braces came off. (They were stained enough that the last dentist referred me to a hygienist in another suburb for cleaning, and I couldn’t even make the appointment.) Baking soda and peroxide will only do so much. I have had a major problem with staining around the edges of a couple of fillings in front teeth, which seem to be lying less flat with the demineralization. Bonding is something I am seriously considering in future, besides trying to get a thorough cleaning while I’m sedated. That should also give an extra protective layer. But, at least this cosmetic stuff is really not such a class marker*  in the UK, “British teeth” stereotypes aside. (Besides being a miserably failed attempt at treating the TMJ problems–making the alignment worse and leading to the points chipping off both my canines–I also pushed for orthodontic work in my early teens because I was sensitive about one winged front tooth from having knocked the baby tooth out. That was the only problem at all, and some kids pulled in into the actually income-independent “hillbilly trash” bullying.) I still try not to smile too wide, because the staining is embarrassing.

But, the major problems that have led me to dread the very idea of dental work apparently come straight from the HMS/probably EDS III. A good summary, from one discussion thread I ran across while trying to find info to reassure myself that these problems can be worked around:

If you have the book ‘Issues and management of joint hypermobility’ by Brad Tinkle, theres a great section on dental and jaw issues in hms. It covers issues such as –Temporomandibular joint dysfunction which causes that clunking in the jaw joint when you chew,
-the issue that we tend to bleed for longer and heal poorly
– bruxism (grinding your teeth in your sleep, apparently we are more prone to this)
– the issue that dental insturments and braces might have to be chosen carefully due to the fragility of our gums.
-the problem that we have with local anesthetic (we tend to need more than normal or it simply doesnt work at all)
-We are more prone to tooth fractures, enamel erosion and crumbling teeth
– and of course the looser gum line with higher risk of infection and receeding gum lines.

I’m going to copy the section and take it to the dentist tomorrow for her to keep. I would suggest others do the same if you have this book as it explains things brilliantly and will be a massive help to your dentist. You dentist wmill be more willing to use more aggressive approaches to deal with gum disease and plaque like my dentist, if they udnerstand why we get it more than normal rather than it being that we just dont clean our teeth as well as we should.

I don’t think I have serious problems with bleeding and healing, but then I also used to assume that local anesthetics were basically useless for anything but making you drool (see also Local anaesthetic failure in joint hypermobility syndrome, “for which reason some had been dismissed as hysterics”), and that having lots of pain and trouble eating for weeks afterward from the jaw freaking dislocating/subluxating was normal. Never experienced anything else myself, and all of that is normal in my family. And with the lousy enamel and/or gum problems, you end up having to have a lot of work done like this, while also getting lectured on your presumed poor oral hygiene and laziness.

And, yes, one of the main reasons I am working around the anxiety to do this post is that the information might help someone else who doesn’t know where the problems they’ve had are coming from.

A wonky TMJ will cause tight and spasming muscles from trying to stabilize the joint, which also leads to more tooth-grinding, just from the tight muscles but also from trying to find a non-existent comfortable position for a jaw that is not quite in joint. The tooth-grinding will also mess with your enamel, and cause receding gums (weak point with HMS/EDS III, because connective tissue). Also, adrenaline from the anxiety and pain themselves can help the anesthetics not work properly. There are lots of reasons people may not numb properly, apparently including being a redhead.**  One of the possible reasons that locals don’t work for most people with HMS/EDS is that a lot of us are prone to dysautonomia with adrenaline overload which can mimic anxiety anyway, which will just burn through the anesthetic– and also a lot of sedatives/anti-anxiety meds–rapidly. Not a great situation, all around.

My mom kept the abscesses from the gum problems, and was relieved to finally have one dentist blame it on her blood pressure medications and dry mouth; she got talked to like a dog for decades over it. I got browbeaten over my own receding gums the last cluster of dental treatment I got, and that dentist even got snotty over my obviously demineralized teeth which AFAICT couldn’t possibly have anything to do with neglect. (Maybe try to find out why they’re in that shape, hmm? 😡 ) There is some discussion of this in DFC’s common fears section on Embarrassed? – What Dentists Really Think:

 “What If I’m Afraid My Dentist Will Scold or Embarrass Me?”

 “Some patients fear being chastised by the dentist for neglecting their mouths. They might nervously comment that “I know I should have come earlier” or “Is this the worst mouth you ever saw?”, expecting the dentist to reprimand them like a disapproving father or a marine drill sergeant. It is no wonder that people with these preconceived notions fear going to the dentist.

This fear seems to have originated years ago when some dentists thought they could “help” their patients by lecturing and/or insulting them. Most dentists today realize that this is a poor approach that ultimately backfires by either driving people away or building up a barrier of resentment. I look at it this way: the patient is coming to me for help. He or she has likely had bad dental experiences in the past, has been out of work and/or lost his/her insurance, hasn’t been educated about modern dental treatment, or is not particularly concerned about the comfort or appearance of their teeth.

Whatever the reason, the important thing is that the person is coming in for dental care now.

The bottom line is that most dentists do not browbeat their patients about the condition of their teeth. That may have been common years ago, but is not nearly as prevalent today. If you are worried about how a dentist will react to the condition of your mouth, try to remember that a dentist has seen everything from black and broken teeth to no teeth at all. Your teeth won’t shock the dentist. If it does, or if your dentist insults you, find a new dentist. There are plenty of dentists out there who do care about helping their patients!”

Another dentist on that page urges people just to walk out if they get browbeaten. Now, in both medical and dental settings, it is not my experience at all that this ridiculous approach to trying to motivate people has become less common. (I think it often has more to do with some unfortunately common power dynamics, and trying to put uppity patients in their places. Where uppity can mean disagreeing with you, or even saying that they’ve had bad reactions to a particular drug in past.) I am not embarrassed about the state of my teeth, especially now that I know there are good reasons for them to have problems, but I do have a reasonable expectation of getting lectured and browbeaten. (Yeah, this also helps me stay away from doctors. Because it is rare that this does not happen over something, IME.) Hopefully this will be less of a problem, going to the anesthetic clinic specializing in anxious patients. I do need to get this immediate problem fixed, regardless, but will not go back if they do not treat me respectfully.

I will be glad to get something done about Horrible Molar– which has been pretty bad for over 25 years, and horrible for probably 20. It’s mostly amalgam, and I haven’t been able to chew on that side of my mouth for at least 20 years. I suspect that the other teeth on that side, toward the back, have been more prone to decay because brushing and rinsing with cold water also hurt like a sonofabitch. I try anyway, but it still probably hasn’t gotten as extensive a cleaning over decades. The TMJ problems, much worse on that side, are no doubt aggravated by the lopsided chewing and probably moving/holding my jaw differently at other times because of the pain and sensitivity. The eustachian tube dysfunction and chronic fluid buildup on that side also only started after the first round of work on Horrible Molar, and I am hoping that getting it taken care of will help with the ear and headaches. As mentioned earlier, just having the pain in a lower molar can make your ear hurt–with dizziness, etc.–besides the swelling and tight muscles blocking your eustachian tube.

The Saga of Horrible Molar has a lot to do with my fear levels around dental work now.

When I was a kid, my mom started taking everyone in the house to a dentist I have come to think of as the Butcher of Dublin. (Virginia) He didn’t seem to like dealing with kids, and he really wasn’t up to dealing with overloaded autistic kids. The first visit, he bit me back when I was biting him out of terror in the first place, and continued to dismiss indications and verbal expressions of real pain from then on. My mother even thought he was kind of ham-fisted, with her adult-sized mouth, but kept going to see him out of low expectations. I started just having to shut down and try to be stoic through the pain, assuming that dental care was just like that.

At any rate, Horrible Molar developed a cavity, and needed filled. That first one was a huge filling, and the tooth started hurting afterward. I did mention it a few times, and got taken back to the dentist, where I got totally brushed off. There was no obvious reason it could be hurting, and so on. I just stopped saying anything about it, because every time I did it was another terrifying trip there for another invalidation session. (At least my parents believed that it really did hurt.)

Several years later–surprise!–at a regular checkup the x-rays showed a big pocket of decay under the filling. Which got blamed for all the problem, and my parents insisted he redo the filling he’d botched at no extra charge. In retrospect, I bet he didn’t drill it out as well as he could have initially because it was already getting uncomfortably far into the pulp, and that was most of the reason for the pain afterward; the pocket of decay couldn’t have helped, though.

From one very helpful, if stressful to read, site:

Upon occasion, while filling a tooth, a dentist will expose the bleeding nerve of the tooth.  Since the patient is already numb, this does not cause any immediate pain, however it always puts the nerve at risk for eventual death.  In order to prevent, or at least delay the death of the dental pulp which would necessitate a root canal or eventual extraction, the dentist may attempt a simple procedure to stop the bleeding and cover up the nerve with a sedative base.  This procedure is called a pulp cap.  The success of this procedure depends on several factors.  If the pulp cap is unsuccessful, the patient will develop a toothache sometime between the time the anesthesia wears off and several weeks after the patient leaves the office….

An indirect pulp cap is often done in order to prevent exposing the nerve.  In this procedure, the dentist intentionally leaves some decay directly over the nerve to prevent any bleeding at all.  If the tooth was asymptomatic prior to the procedure, the prognosis for pulpal survival is fairly good, although the tooth will probably need a root canal a number of years later.  The decay left over the nerve becomes inactive since the base used over it causes it to harden up over time, and also because the composite or amalgam filling should “waterproof” the cavity sealing off any nutrients that could allow the bacteria in the decay to live.

That sounds remarkably like what this dentist decided to do, without telling anyone. By just bunging amalgam in there, with no sedative base. Only it didn’t work out so well, the decay grew–and he brushed it off instead of, erm, trying to fix the problem. A long quote on how this kind of thing causes pain, from another page on the same site:

Left alone, the pulp in a tooth has no reason to get sick. However, it is only a piece of tissue like any other soft tissue in your body. Take your finger, for example. When you injure your finger, say you cut it badly, or get an infection under a fingernail, it reacts immediately with pain, and shortly thereafter, it swells up, getting red and warm. These are the signs of inflammation, and the dental pulp reacts the same way when it becomes injured.

Injuries to the dental pulp tend to be from decay which becomes so deep in the tooth structure that it actually touches the nerve. Inflammation of the nerve can also be caused by trauma (say a hockey puck to the mouth), and frequently is the result of multiple assaults by dentists trying to eliminate yet another area of decay.

Lets say that you have a cavity and the decay touches the pulp. Where it touches the pulp, it is likely to swell up a bit. But consider that the pulp, unlike your finger, is contained tightly inside of the tooth. Any swelling in the nerve is likely to cause such tightness inside the pulp chamber that the blood vessels that supply the pulp with oxygen and food are shut down. This is a condition known as ischemia, and is the same thing that happens when you wind elastic bands around a finger for too long. It is a VERY painful condition.  The nerves that travel with those blood vessels are connected with your brain by means of very long cellular fingers called axons. Your brain gets the message and you have a bad toothache. Even worse, the condition is not reversible, and the ischemia causes further shutting down of the blood supply until the entire dental pulp dies off.

You might think that once the pulp died off, the nerve fibers would die off with it and the pain would cease. Sometimes, this actually does happen, but many times, the nerve fibers remain alive because the main cell bodies of the nerves themselves live outside of the teeth (in clumps of nerve cell bodies called ganglia—-the major ones are located about an inch and a half inside your head about even with the earlobe). This leads to chronic pain, especially with cold or hot foods because the bare nerve fibers are sick, but alive encased in a hard tomb with a bunch of very smelly and infected dead stuff. Even if the nerve fibers inside the tooth die off, and the immediate pain does end, you are still not out of the woods. That dead material begins to leak out of the tip of the root and a pus sac forms (see x-ray on left) filling up with pressurized pus which causes extreme pain when you touch the tooth. This is the beginning of an abscess. The picture on the right shows a young boy with a severe abscess.

I’m pretty sure it was on that site that Dr. Spiller explicitly pointed out that just bunging a filling right in on top of exposed pulp will give you a serious chronic toothache. But, yeah. This is exactly the situation I seem to have ended up in, with Horrible Molar. And, from the description of an abscess beginning, this has likely been a lower-level problem for quite a while now.

So, we’ve got already ham-fisted Butcher of Dublin who had always just ignored and dismissed pain, and the few occasions when I’d pointed out that I wasn’t feeling numb at all as compared to the usual experience of some numbness wearing off very quickly. Dude did not like me, and did not listen. And now he’s redoing botched work without getting paid more, probably feeling resentful and wanting to get it over with in as quick and easy a manner as possible.

This was one of the occasions that my face didn’t even go numb initially from the local. Usually my face will numb a lot more than the actual gums and teeth, and it doesn’t wear off as scarily fast on the face. I’ve had my forehead, eyelids, and most of my neck go numb, when other dentists did pay attention to me and gave me extra anesthetic. Didn’t do much for the actual dental pain. That time, he sighed and did give me another injection.*** Then ignored me when it still wasn’t numb.

It was bad enough when he was chiseling out the old filling. But, by then, I was in my teens, and I had long since learned to do the combo of shutdown and stoicism. It was pretty bad when the drilling started. Then he hit a nerve.

I started screaming and trying to yell “stop!!!” as well as I could with a molar getting drilled. He ignored it. My legs came up to my chest, reflexively, and I tried to kick him off me before I even knew what was going on. That just got me pinned down, while my legs kept trying to kick at him, and he kept drilling. (I don’t know if he even drilled out all of the decay, after hitting the bleeding pulp; the sealant over that filling has come off in chunks since then, which might have allowed it to get nasty under the filling again.) And I was mortified at my own “overreaction”, and managed to keep myself under more stone-faced control until the filling got replaced and I staggered out of the office. With a dislocated jaw, Horrible Molar having turned more horrible, and no pain relief. Scarily, I think I was actually old enough at that point that I drove myself home afterward.

Horrible Molar has been horrible since then, for pretty obvious reasons. Some days it’s better, some worse, but if the pulp is not already totally dead it’s surely getting there. After that experience, I did not even say much about the pain afterward. Again, for pretty obvious reasons. I doubt that the chronic toothache has been doing much for my daily functioning.

I’m running out of steam here, and need to go to the grocery store before it closes. But, the best experience I have ever had with a dental procedure was when I had totally impacted wisdom teeth cut out, under IV sedation by a proper oral surgeon who actually seemed to be a decent human being who listened to people and all that good stuff! Basically medically admistered roofies. I had just a few flashes of memory from the time they put a mask on me, to the time I woke up the next day. And they somehow managed not to even throw my jaw out of joint, which even with dry sockets afterward meant less pain afterward. (That time, ironically, with a big supply of Vicodin, and refills I didn’t need offered a couple of times in spite–or maybe because–of my continuing attempts at stoicism. Which was considered appropriate for far less pain than I have gotten from the average filling.) Maybe being totally sedated and not anxious with tight muscles also made a difference there, with the jaw staying put. Maybe they noticed and actually popped it back in before the inflammation had a chance to set in and hold it out of joint. But, yeah, the local anesthetic just not working right is not a problem at all with enough sedation.

Finding out that I can, indeed, get horrible things like root canals or extractions done under that kind of sedation? I’m still extremely anxious about going, but not to the point that I will live with a serious toothache for 20+ years to avoid it anymore. And maybe some Valium in advance, and gas for a cleaning? It sounds like some wonderful dream, and I am honestly half-afraid of getting told that I obviously don’t need that and need to stop making a big deal out of nothing.

I have no access to antianxiety meds (not only a problem in this context), or I would take some before the initial consultation. Hopefully they will give me some/actually enough for premedication before the followup appointment. Shedloads of Xanax–remember the burning through it with adrenaline factor?–was nothing like adequate for helping with the anxiety or pain from fillings in past, but it was necessary to even get me out the door and into the car. And no fucking wonder. Hopefully between an apparent abscess and Mr. U jollying me along, I can manage to go once an appointment is set.

_____________

* Excellent point from the original article:

Dental problems frequently mix and match with other chronic disease to create illness cycles that prove especially difficult to break. Because they affect the ability to chew, untreated dental problems tend to exacerbate conditions such as diabetes or heart disease. Being limited to soft foods is particularly problematic for people with diabetes, who must be careful to eat well in order to control blood sugar levels. Missing and rotten teeth make it painful if not impossible to chew fruits, whole-grain foods, salads, or many of the fiber-rich foods recommended by doctors and nutrition experts. Typical daily diets for those who cannot chew tend to include large quantities of processed lunch meats, canned potatoes, and cream soups—food choices that are particularly bad for people with diabetes. To make matters worse, healthy foods also tend to be more expensive.

I hadn’t thought of this specifically before, but indeed. We don’t have economic problems with food access, but this is one of the many reasons I have held off on switching to a much lower-carb diet which would bring my blood sugar levels down: with the baseline dental and TMJ problems, I need to eat a lot of soft food which tends to involve potatoes and rice in particular. Actually, I am wanting to make some  potato soup tonight, lousy as I feel right now, because that is also a major sick people comfort food I grew up with. Don’t feel good, eat potato soup.  (Also lots of dairy, with my thankfully high threshold lactose intolerance, which at least means it does not raise my blood sugar at all from testing after drinking/eating dairy products! This is actually one diagnostic, apparently.) Eggs and mashed non-starchy vegetables are good too, but… And it’s obviously not just diabetes.

** Which makes me wonder about (also bendy) Mr. U’s own dental avoidance; he didn’t seem at all surprised to hear about the red hair link. I also feel bad about trying to talk through some of my worries with him, much less needing him to go along, because his own avoidance is to the point that he tried to convince himself that a cracked tooth had miraculously healed itself. Seriously. He’s got wonky knees, etc., himself, and the only times I have known him to take so much as an aspirin was when he got what turned out to be a weird infection in his elbow joint and needed to leave work early to go to an urgent care center because it hurt so much–and dealing with a couple of flares from that cracked tooth. Which is also liable to abscess one of these days. 😐 I’m afraid there is some pain problem now, because I think he may have stopped brushing as regularly. (With no bad breath, at least… I haven’t even wanted to ask.) But, an awful lot of people have reason for avoidance.

*** I found some dark hilarity in another article pointing out that the actual injection with the huge veterinary-looking syringe should be painless, if they use enough numbing gel and let it sit long enough to work. That depends on the topical anesthetic actually doing something beyond leaving a truly nasty taste in your mouth, and maybe making your tongue tingle. 😐 I always wondered why they even used the stuff, when I wasn’t wondering just how awful those injections would feel without it! I got over most of my needle phobia through necessity, but have indeed also avoided saying anything because the extra injections are so painful, often for little additional benefit. A couple of times I have wanted to just skip the whole needle thing, but was strongly urged that I didn’t want to do that because the work would be unbearably painful without it. Erm, yeah.