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ellieptical · 7 years ago

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Getting a little self-indulgent

I often see that post going round about women being misdiagnosed because Drs don’t listen to them or think they’re being hysterical and I add bits to it but I kinda just want to talk about my experience here. This is going to be kinda graphic and teeth related.

So when I was 7 I’d had some headaches/toothache for a little bit but not really done or said much about it and then one day my top gum started leaking pus and blood. A lot. Mum took me to an emergency dentist who said I had an infection and gave me some antibiotics. A few weeks, maybe even only a week later it happened again, a lot. So mum took me to the dentist who said it looked like some sort of cyst or something in the gum area, but sent me to the hospital to check. X-Ray or two later and it was diagnosed as a cyst in my upper maxilla with an adult tooth that had grown up instead of down and was pressing on the nerves around my eye .The orthodontist shortly before slipping and sending the anaesthetic needle through the front of my lip rather than into my gum used this exact phrase to a 7 year old “if we don’t remove it you’ll go blind” so I had it removed through a Caldwell-Luc operation (don’t google this when eating or about to have one), they removed some jaw bone and removed the cyst and tooth. Boom all fixed.

At 13 I wanted straight teeth, so I went to the orthodontist who took an x-ray and told me I couldn’t have a brace (I already had a retainer) because there was a gap in my jaw bone and I’d have to have a bone graft from my hip. So I declined this. I wanted straight teeth but not that much, this will very much come back to bite me in the arse later.

I felt lethargic, unwell, sore, headachey, nauseous, tired, angry, achey, tight in the jaw for a while, through uni, and early work days. It got worse and worse, my jaw started to get stuck so i couldn’t open it, my neck would start burning, I’d feel like my shoulders were on fire, I’d feel so impossibly exhausted. I started going for tests it was not: thyroid, cancer, a tumour on my adrenal gland, kidneys, diabetes, ME, CFS, Fibromyalgia, hypoglycaemia. Ferritin stores result came back very low. Took iron tablets, this didn’t fix it. Was referred to Maxillo-facial (henceforth macsfacs) who deemed it to be temporomandibular joint disorder. The consultant who diagnosed me also had TMJ and said on a bad flare up he’d rather get booted in the balls. Well that pain level seemed to tally with the pain I was feeling. So I took the tablets and hoped I’d learn to live with it. I did not. The pain got worse, I missed days and days of work. I would have attacks of pain for no reason, nothing would trigger them, or there’d be a draft at work and all of a sudden I’d lose three days due to pain so bad I couldn’t speak. I’d forget how words worked, I told someone I liked their sheep - I meant shoes. I’d start trembling, and lose feeling in my hands and feet, I start slurring my words, I’d pass out. Then I’d be mostly fine, sore and achey but fine really. But I kept going back to my doctor, and off for the next round of tests. I finally went to see macfacs and I saw an old, white male consultant, who sat in front of me as I cried hysterically and explained to him that the pain was so bad that I was going to step in front of a bus because it was intolerable and I will never forget what he said to me “well, I think you’re probably exaggerating, it’s not that painful or you wouldn’t be able to do half the things you do” I sort of gold-fished, and he said he was standing by the junior consultants diagnoses of TMJ and that I’d “get used to it eventually”. A few months later I was sitting outside my BSL course when I had one of my fits, I couldn’t feel my feet, I couldn’t say anything, I couldn’t ask for help. I was terrified. It passed, I was exhausted but I got through the class. I walked home.

I called my mum at 2am the next morning, screaming down the phone that I was dying and didn’t know what I was doing, I kept asking her for help but gave her no instructions or anything, largely because I didn’t know I’d called her and left a voicemail on her machine. I think somehow texted my housemate with just the word ‘help’. She came bounding upstairs and helped. She tried asking me questions but I was out of it, I was just screaming, and she called my Mum who was already panicked trying to get a taxi after being woken up by her only child screaming into her answerphone that she was dying. I guess my dad was in respite at this point I don’t know. Eventually my housemate called an ambulance and they did the usual questions and determined I was probably having a stroke. Spoiler alert: I was not. The ambulance came, and the little man on the bike, and the slightly smaller ambulance - it felt unnecessary for 4 people to come out but they did and it cost me not a penny BECAUSE THE NHS IS FUCKING INCREDIBLE!!!!, and they took me downstairs whilst I flailed about and reassured my other housemate whom I worked with that I’d be ‘in tomorrow just a bit late’. I don’t really remember too much except a) gas and air is fucking incredible! b) i kept telling my mum and the man with the bleeding face next to me that I’d left my keys at home and I wasn’t wearing a bra. I eventually got seen and by this point the pain was subsiding and I kept apologising profusely but the A+E doctor pointed out that I’d experienced pain severe enough that a dispatcher and 4 paramedics (one of whom really thought I should have been admitted for a brain scan not put through A+E but it was 3 am so...) thought I was having a stroke. Not to worry but here were some lovely drugs.

A few weeks later I saw my doctor again who this time thought it might be ME as nothing else was tying in but wanted to just rule out anything neurological so referred me to another Dr who as I described things listened and then sent me for a different scan. I got a referral through to ENT because it turned out there was a piece of bone in my face that shouldn’t be there. Basically the boney part of the cyst from when I was 7, they’d only removed the soft tissue. So I had an operation and they removed that. Some of the pain stopped. I didn’t have the same issues but it still didn’t feel right. I ended up seeing a locum as my doctor was off with their own medical issues. I kept saying it feels like there’s some swelling in my face and so I got two courses of antibiotics because eventually they referred me back. Another scan. Then an appointment out of nowhere with macfacs.

Turns out macfacs has done a lot of reshuffling because everyone is new and when I mention the old guy they all go ‘ah yeah, he’s gone now’ with the strong implication that he was a cunt - possibly my inference but whatever. Turns out I had a tumour in my face. It’s benign in almost all cases, mine included thank god, but it’s rare 3% of the population get it, and almost always men, and it’s aggressive it’s main deal is that it recurs. I had one when I was 7, in 2012 and in 2015. It gets into bone and takes over. It’s why after my first operation my bone didn’t heal and I have a hole in my jawbone now. Like I said... shoulda got that brace! They’d have seen what was going on then. So I had another operation at Xmas in 2015. I had the bone inside my upper maxilla, removed and sanded down, the nerves scraped or removed, and painted with essentially embalming fluid, I lost a tooth because the fluid touched it. It was a joint op between ENT and macfacs. I have to go back every year for 10 years and there’s something lurking but it seems to be just the weird shape I’ve healed into but I’m not taking it for granted. I still get some pain and flare ups because my bone is still regrowing. I can’t feel my top left lip at all or a lot of my cheek either. I have a permanently damaged shoulder because of hunching with the pain. I know now because they told me that I had trigeminal neuralgia as a symptom of this tumour, which it’s rare that it would have a tumour as an underlying cause but I did. It can flare up from eating, from the wind on your face or from nothing at all. I explained to person after person what I was feeling and it took so long to get a diagnosis and a fix. The only reason I got it was because of my Doctor who listened and persisted. She’s a female doctor. There are three other female medical professionals in this story. The paramedic who thought I should have a brain scan, the A+E doctor who told me my pain was valid and the neurologist who listened and thought to send me for a different type of scan. They all listened to what I was saying, or slurring. My doctor kept trying, she didn’t abandon me, she really did everything she could. Including handing me copious amounts of tissues whilst I hysterically sobbed at her. So many of the male doctors I saw and see regularly now are lovely and so kind but I had to fight to get them to listen, they had to be shown evidence before they’d believe me.

I am so grateful that this whole debacle was on the NHS it didn’t impact me financially, I was able to work, I am very aware of the privileges I have but it’s only now as I start to feel fully better (well, the iron is still an issue), and have a friend experiencing migraines so look up things for her that I start to realise how much shit I went through and how angry I am that something that should have been solved when I was 13 was only solved when I was 29. If you know something isn’t right with your body keep persisting, get someone to come in with you - preferably a man, change doctors if you have to and you have that luxury, ask for a second opinion.

And finally, if one more person says ‘oh it’s like having a wisdom tooth out’ I am going to fucking put pressure on their trigeminal nerve!!!!

#about me #needed to vent #dentistry #doctors #god bless the nhs #illness #pain

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