"I felt that every concern I had was ignored"

About: Manchester Royal Infirmary (Oral and Maxillofacial Department)

(as the patient),

Basically, I have Ehlers-Danlos syndrome, type 3. My teeth are crumbling. There appears to be no first-line dentists in my PCT who can treat me - I am told that they expressed concerns that my condition was too complicated, and have also heard those concerns first-hand from two practices. The latest referred me to the dental hospital in Manchester as they felt I would get better treatment there. The dental hospital referred me to Manchester Royal Infirmary's Oral & Maxillofacial department, as they thought it best, given that my condition means local anaesthesia works for me only on very rare occasions, that I be given general anaesthesia for a triple extraction, particularly since I have a phobia of needles.

The surgeon I saw at MRI - who did not introduce themselves before they got their assistant to sedate me. They decided that I didn't need general and that sedation and local anaesthetic would be so much safer - despite my trying to tell them that local anaesthetic almost never works on me and I have a history of bad reactions to benzodiazepines. They refused to perform the extractions unless they could use local anaesthetic, and refused to do anything else if they did them at all.

I felt that every concern I had was ignored and bullied into having my procedure with local - because I'd been waiting two years by this point to have those three teeth removed, as they'd gone very bad and I was worried I might get another infection if they were allowed to deteriorate further.

He gave me IV midazolam - which, unusually, actually did sedate me to a point - but I was still aware of the entire procedure, I just couldn't communicate during it. They then extracted all three of the teeth in question - bracing the pliers against a good tooth to extract a bad one, which loosened the good tooth and left that painful for over a month afterward. This was after my trying to tell them that the collagen in my whole body is defective and my gums can't hold my teeth in as well as most people. My jaw was also dislocated during the procedure and, though they put it back, it hurt a great deal more than usual for the next few weeks.

The surgeon left and discharged me without speaking to me again when they were done. I felt they just pushed me onto their assistant, who observed me for an hour then gave me a discharge pack. The assistant said no word about dealing with the fillings; the surgeon said I needed another appointment, or about making another appointment. I was in such agony for the next month - I felt everything during the procedure, and the surgeon also had managed to deform the socket of the upper tooth I had extracted, which left a sharp edge of bone sticking out against my cheek for weeks - that I had to ask my GP to let me double my usual dose of morphine, which usually is something I only do in the days immediately after a full joint dislocation.

I still don't know the surgeon's name, because I was sedated enough not to remember it when they told it me. I am trying to deal with this situation through PALS, but am still formulating a response.

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