30 July 2012

♫...What's in your head, in your head?...♫

Well... my jaw pain, allegedly.

Getting told that your physical condition is psychosomatic is disturbingly common. In the past it's happened to me but only over a period of a couple of months, and it wasn't a serious condition anyway.

In 2003 or 04 (I remember it was when I lived in Golders Green, which was from June '03 to June '04) I finally told my GP that I had trouble making out what people were saying, especially if there was any background noise. It had been a problem for about a decade but I'd not bothered to see anyone about it. As hearing loss caused by a fractured stapes is common in osteogenesis imperfecta my GP sent me to the Royal National Throat, Nose and Ear Hospital to get my hearing looked out.

When my hearing test came back fine, the registrar told me that I was mad and purely imagining that I couldn't hear. He referred me to hearing therapy to "teach [me] how to hear". The hearing therapist was horrified at how I'd been spoken to. She also gave me an actual diagnosis which explained all my hearing issues: Auditory Processing Disorder. Yes, it's a brain condition rather than an ear condition; but there's nothing imagined or "mad" about it. It's essentially 'sound dyslexia'.

I've had another case where I was told that I didn't have the medical condition I do actually have, but instead of being told I was imagining it; I was told I had a different medical condition. For years I was told that I had nothing wrong with my sinuses, that I was having migraines instead. After a couple of years of Idiot Registrar not being able to spot inflamed sinuses when they literally sneezed on him; he finally deigned to look at a CT scan of them. "Oh, there is something wrong with your sinuses after all" was his comment upon re-entering the room.

Rather ironically I now do have migraines caused by my sinus problems going untreated for so long. The lack of treatment damaged the nerves in my sinuses and you have nerves that run through your nose and into your brain. The damage to these nerves triggers migraines in me. So thanks for that little gift, Idiot Registrar.

My jaw became an issue about 3 years ago. The muscles started spasming and it subluxed pretty regularly. I would often wish someone would stand on the right hand side of my face to keep my jaw where it was supposed to be. One day I remember @BendyGirl tweeting that she'd just stood on a friend's pelvis to reduce it; so I responded along the lines of "great! Now get down to London and stand on my face to keep my jaw in its socket."

Over the years my jaw problems have progressed. I reached a crunch point in the first week of February this year: My jaw hurt so much that I spent the whole week so bombed on morphine that I didn't even notice when I re-fractured the metatarsal I'd originally fractured 6 weeks earlier. And my jaw was still more painful than I could bear.

So I went to see my GP and he referred me to maxillofacial. The referral was rejected and my GP was told to send me to the Facial Pain Clinic at the Eastman. He did.

So I went to the Eastman on Wednesday expecting an examination of my jaw, some x-rays and general usual hospital appointmentness.

My appointment was at 9:30, which was about when I arrived at the building. The clinic I was going to was in an area marked "2" so logically I went to the second floor. Area 2 isn't on the second floor. Then there was the orderly jamming the lift door open with a laundry cart with me inside. I mean I was inside the lift, not the laundry cart. By the time I reached clinic reception I was 18 minutes late. They refused to see me for "being half an hour late". Which is odd because I hadn't realised that we now had 40 hour days.1

I go to a lot of hospital appointments. Wednesday was my second appt in the space of 6 days. I think this is my first appointment ever that was running less than half an hour behind schedule which was why I was quite laid back about not arriving at the hospital bang on the appointment time. Smegging typical that the first time I encounter a hospital running on time reception is staffed by punctuality obsessives. But then I guess they would be the people who'd get a clinic on schedule.

They wanted me to go home and come back in September. Of course, I now know that it wouldn't have made a damn bit of difference, but at the time I was reduced to begging.

The doctor agreed to see me but I was then subjected to more tutting and eye-rolling from reception because I hadn't filled in my pre-appointment questionnaire, having banked on doing that in the waiting room.

I will say one thing for the clinic reception/waiting area: It's got aircon. Presumably because they also handle a lot of private patients. I guess if there's going to be a silver lining to the recent NHS Act it might be that with 49% of beds going to private patients we start to see hospitals that aren't all ovens.

The appointment itself lasted an hour which is unusual. You'd think that would be an example of excellent medical care, wouldn't you? Except it was 58 minutes of asking me about depression and 2 minutes of examining my face. Which really tells you what the clinic is all about.

Some gems from the consultation included his incredulity that the pain clinic have never sent me for counselling. Like talking about my feelings is going to stop my sinuses from hurting or cure my osteogenesis. I consider myself genuinely blessed to go to one of the few pain clinics where they don't go in for the bullcrap touchy feely stuff and just prescribe painkillers.

When talking about my sinuses he asked the question "and did they actually find anything wrong with them?" He was obviously working on the assumption that I don't have any real physical conditions and I just have conversion disorder. I'm surprised he didn't question my OI and claim I'm making my scleras blue by being miserable.

I should've foreseen what my diagnosis was going to be when I explained that because of my hypermobile hands I do things like unscrew bottle lids with my teeth and he was totally unperturbed. People who care about my oral bone health usually go batcrap over that; even though my lack of useful hands make it non-optional.

He clearly didn't believe me when I explained about the subluxing jaw. He kept saying "but you've never had your mouth get stuck open and been unable to close it..." He seemed incapable of understanding that hypermobile joints dislocate easily, but they go back in pretty easily too. During the incredibly brief physical examination he exclaimed that the distance I can open my mouth is "very good." I'd bet my cat's whiskers that before my jaw became problematic I could open it even further. Despite his acknowledgement of the existence of hypermobility, he wouldn't accept that I had it in my jaw and clearly didn't believe my jaw had ever come out of its socket.

Notably he didn't ask me if I'm on bisphosphonates; a common treatment for osteogenesis. An important question given that it could cause osteonecrosis of the jaw. (I'm not, so that's not my problem.)

Unsurprisingly my diagnosis is that my jaw pain is psychosomatic. The cure? Group therapy. Really. They don't just have psychologists on hand at the facial pain clinic though; they even have shrinks ready to dole out psychiatric meds rather than accepting that sometimes people have something wrong with their jaw.

Without any medical training myself I presume my knackered joint is causing my muscles to spasm in the same way that my weak hand joints cause muscle spasms when using a pen. Yes there is a stress element to it: Tense muscles get worse when you're more tightly wound generally; just ask anyone with cerebral palsy. But does that mean CP is psychosomatic? Of course not.

But what I am sure isn't psychosomatic is the crunching noise my jaw makes when I yawn or chew. It sounds and feels just like the crunching noise my right ankle often makes: A joint that's had its worn-outness confirmed by MRI.

So now I know why maxillofacial rejected the referral: They obviously saw citalopram and amytriptiline on my drugs list and assumed there's nothing physically wrong with me; I'm just nuts. Despite the bone disease...

What can I do now? Well there's not much really I can do except go along to therapy and talk about my fucking feelings even though the flapping up and down will make my jaw worse, if anything.

Other suggestions for treatment include "a relaxing activity with a physical element like yoga or gardening." Logic fell over and died at this point: I already garden and my jaw fucking hurts.

I'm also supposed to get some exercise. You know; like the miles I push and the swimming I do. I may have been priced out of going to the gym but I don't spend every moment of the day gawping open-mouthed at the telly. That noise you can hear? It's logic turning in its grave.

I love the NHS. As I've explained before a really important thing is giving feedback because that's how you help something you love function better. So hear this NHS:

You could save a fuckton of money if you stopped denying people medical help for years while they get worse claiming that the patient is "just depressed". It's the worsening which is where you lose the money. An assumption of conversion disorder should only be reached once you've ruled out all logical physical possibilities. It should never be a first stop before you've even carried out an examination. I know at least 10 people, probably more if I asked around a bit, who've at some point been diagnosed with conversion. One does actually have CD that fits, the rest were eventually given a physical diagnosis.

When I got home I was emotionally shattered from a shit appointment and physically shattered from driving back from visiting my dad in Colchester hospital the night before. I immediately crawled into bed. Thank goodness for cats: Betty decided to take my mind off things by lifting her tail up, reversing in and then sitting down on the pillow with her anus about 3cms from my nose. Finally something to laugh at on a miserable morning.


1 Thanks to Robin for the maths help with that one. @Uppo1963, @latentexistence, @PatParslow, and @indigojo_uk all answered my question also; but Robin got there first.