Last week after no little stress about parking I went to the Dental Hospital in Liverpool for my appointment with the specialist. I was shattered and lacking spoons having been at Futuresonic the previous day so I wasn't thrilled to have to haul myself out of bed at some ungodly hour. Probably about 8am!
After all that fuss about parking it turns out there is a shuttle service from the hospital's multi storey carpark across to the Dental Hospital. Having previously experienced such services which finish before the outpatient's clinics do thus abandoning one miles from the car I'm wary of them. Fortunately it is possible to use a bluebadge to park on the road outside the hospital but not before 10am.
From start to finish I was incredibly impressed with the staff at the Dental Hospital. Once I'd arrived and registered I was helped through to where the clinic was and before long was taken through to see the specialist in restorative dentistry.
I nearly fell off my feet when the dentist and her lovely dental nurse informed me they knew lots about Ehlers Danlos Syndrome because they were already treating three other people with EDS. Whilst I've occasionally seen doctors who've known a little bit about EDS, outside of the bendy people specialists I've never been in a situation where medical professionals are well versed in the ins and outs of EDS. It was really quite bizarre, but in a good way, especially once I realised they actually did know a great deal about EDS rather than just insisting they did so!
The dentist asked me the usual questions dentists ask but also lots about EDS and how it affects me. They were quite anxious about the idea of me dislocating whilst in the dentist's chair, but I think(hope!) they became less so as I explained I relocate my own joints. As I was sitting in the chair I had to relocate my thumb which made such a noise the dental nurse went green, although not as much as the dentist did when I mentioned dislocating my larynx! We had a discussion about how they would manage should I need a general anaesthetic, it seems the level of knowlege at Liverpool's Dental Hospital is so good they even have a particular anaesthatist they use who treats all the EDS patients. The conclusion was that should I be anaesthatised they would want to put me on some sort of spinal board to stop me flopping about too much and to manage my airway more intensively.
LC referred me to the dental hospital after my regular dentist had told me I needed a filling, because people with EDS often have problems with local anaesthetics, particularly lignocaine. The problems vary, for some it can take a long time for the area to become numb, in others the anaesthetic seems to travel and they become numb, just not where the anaesthetic was placed. In my case I was shocked to discover local anaesthetics were supposed to make you numb as I'd always believed them to be a particularly poor form of painkiller. I've also had problems with scalene blocks not numbing me properly.
I needed to have some x-rays done so the lovely dental nurse helped me to the radiology department. She was apologising that I'd have to wait until the reports were ready to bring back to clinic so I thought I was in for a long wait. It was maybe 10 minutes or so before I was taken through to be x-rayed. The department's most senior radiographer explained to me that as soon as she'd seen EDS on the form she'd decided to x-ray me herself as it wasn't appropriate for a student to do alone. The biggest problem I had was standing up for the length of time it took for the x-ray machine to take the image, even holding on to the handrails I was still a bit wobbly. Should it be necessary to have more x-rays I'll be sitting down next time! I've also still got a paper type cut in my mouth from the sharp sided x-ray plates.
After only a few minutes the radiographer gave me the reports and I headed back to clinic. My teeth are actually in excellent condition, and as I'd part suspected I don't need any fillings. I occasionally refer to my mother as 'the sugar nazi' and I have her to thank for the good condition my teeth are in. To say she was fanatical about not allowing us sugar as children is understating the case, but as I've reached 33 without needing a single filling I'm grateful.
The main problem I'm having is some erosion. As I don't eat an overly acidic diet the source of acid is probably stomach acid coming into the mouth via reflux. The long periods I've had in the past when I've been so lax I've been unable to stop vomiting have also contributed. The dentist prescribed me some sort of special toothpaste which being scatty as I am I forgot to pick up before I left, and arranged for me to see the specialist dental hygienist as my teeth need far more frequent cleaning than is normal.
Whilst we were talking the dentist asked me if I would go and give a talk to their 4th year dental students in September to educate them about both EDS and the additional needs people with disabilities or chronic health conditions have regarding dental treatment. Any advice readers can give I'd love to hear, from those with additional needs or from those who are students/medical professionals about the kind of things you would want to find out about?