Health, Trigeminal Neuralgia

My Face Full of Metal!

X-ray - showing teeth and on left side of face lots of metal clips from surgery for tongue cancer

I went to the dentist this week, something that’s so so important since treatment for lots of reasons. But today’s the reason was for the x-rays was to rule out a abscess or similar cause. I’m getting phantom tooth pain and pain on my good side which looks kind of like this…

Graphic of head showing different pain areas including my cancer pain area in purple.
My pain is the purple bit….

I thought it might be to do with the fact my jaw dislocates regularly maybe 6 times a month…that’s full dislocations …and subluxes or get stuck 30 to 40 times a month. Some of this will be my Ehlers-danlos Syndrome, but prior to treatment I’d never had an issue..

The dentist suggested Trigeminal Neuralgia ….now I’m not gonna jump the gun as it needs confirming at the hospital ( Luton and Dunstable hospital I think he said) but one Dr Google search will tell you it was once called the suicide disease due to the pain and how severe it can be. I had an 8 hour straight episode of this pain (on the top of my regular pain ) ….it was along the jaw line then straight up between the ear and temple. I suffered extreme electric shocks leaving residue of an ache which increased after each one, well an ache x100…it was so bad I didn’t move or speak the whole time. I was petrified of making it worse.

Me holding cloth to my jaw - cancer pain.

I even used a cold compress (I hate anything cold touching me)…so let’s see what the hospital say. It will hopefully be something of nothing. . Or a simple fix (I’ve said that before 🤦‍♀️🤦‍♀️😂)

On leaving the dentist I asked for a copy of my x-ray as it looked so cool. I was asked to take a seat. A few minutes later I could hear a gaggle of women:

*what’s wrong with it? *its got interference *it looks like paper clips *maybe the files corrupted… I waited before I spoke up because it was hilarious, they were flummoxed ….

I walked over trying to stifle my laughter *NOPE they are in my face 🤣🤣🤣🤣…I’m just full of metal staples and clips*….. their faces were a picture….I did feel a bit sorry for them if I’m honest. They initially looked mortified, but I managed to turn it round and we did manage to laugh about it.

In what’s now become the norm I saw this as a key opportunity to educate them about mouth cancer, more specifically tongue cancer – so I was chuffed. They did ask if I was aware of them (the clips), and it’s a very strong YES, feel them if I lightly push on my face, jaw and under my jaw and sometimes I think I’m aware of them if I’m out in the cold. Maybe that one’s in my imagination…I’m not sure.

I do apologise for the state of my teeth as they have crumbled post radiotherapy. It’s a real struggle for those who’ve had head and neck radiation. It has cost me hundreds in dentist bills. They’ve also all moved due to the extra space created by the extractions when I had my cancer operation, but since I’ve had another 2 or 3 out. I do worry I’ll be left with none and as cause of the sensitivity and pain in my mouth is unknown, I have no idea if dentures would be an option…. but let’s not jump the gun there..

still smiling

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