Since January this year, every month I have been a patient of Guys Hospital.
Due to the severe periodontal damage and gum disease that Ehlers Danlos can cause, my teeth had ended up in a terrible state, plus I have a real phobia of dentists and dental procedures. If I am honest the phobia stems from pre-diagnosis days, basically anaesthetia doesn’t work well on EDSer type patients. So from my childhood years to the age of 40 I have never known why going to the dentist, being injected and it still hurting was possible. Dentists would say that was not possible and I had managed to find a local clinic that would knock me out for “heavy duty” work but not for general care.
In January I broke a tooth, in fact it happened a while before that but by Jan I was in agony and knew I couldn’t hold off any longer, so agreed to see a dentist. Que call to my old dental surgery and yes I was still on their books, they kindly fitted me in as a matter of urgency and Andrew took me straight down. My dentist there was pretty fab, he obviously was unaware of how sick I had become and we chatted about the EDS, he had heard of it in dental school, I was his first ever real patient. So he was quite thrilled, he gently examined me and promised he wouldn’t hurt, Andrew held my hand and good to his word I didn’t yelp once. Decision made, a temp plug would be put in the gap but an urgent referral up to Guys was needed, he felt I needed their EDS specialist knowledge. So for the last six months we have been day tripping up and down to London for treatments, I’ve had fillings, tooth extractions, major cleanups, tooth shaving and now we are at the stage where they are looking and feeling good.
When my tooth was removed in May, I developed a Fistula, it’s a tiny hole between the gum and the nasal cavity, I’ve had three severe bouts of sinusitis, with a constant infection lingering. I’m ow on my fourth set of antibiotics and I have nose drops too. I went last week to see the Oral Surgery Team, twenty third floor, and it’s been decided that they need to operate. After hearing about what’s got to be done, I’ve opted for a quick GA, I don’t think sedation will be deep enough for the amount of work they need to do. Then I am hoping my oral issues will be resolved for now. Op date is set for early next month, so I’m just waiting to speak to the surgeon next week to confirm.
After this it will be back to annual check ups hopefully at Guys with just a clean up, while I am asleep, that way I may keep my teeth for a few years 🤞🏻