Tuesday, May 19, 2009

Delightful Dentistry!

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?


8 comments:

Louise Bolotin said...

I was fascinating to read this post. Whenever I go for my twice-yearly check-up, I always, but always get asked about my epilepsy. The info is all there on the computer but they never check it. If they did, they'd know the chance of me having a seizure doing treatment is really tiny. More annoyingly, although I have tonic-clonic seizures (ie, the full-blown, classic type) dental staff always seem to assume that's the only type of epileptic seizure. And not everyone has the same symptoms for certain seizure types...

LceeL said...

I am SO glad to hear that you had a good experience with the Dental people. further - that they've asked you to speak to the students about EDS. That's amazingly cool. And SO forward thinking for what is normally assumed to be a rather stodgy establishment. well done.

Dark Side said...

Really pleased to hear it went well for you and what a relief to also get someone who knows that they are talking about.

You rock by the way no wonder he asked you to do a speech you will be amazing if your writing is anything to go by...xx

Fire Byrd said...

AS from June by brother in law joins the team there. And if he is anything to go by as a dentist no wonder you think they are good.
xx

Dave the Dog said...

Well done you. It sounds as though you impressed them as much as they impressed you!

Achelois said...

Humph as a fellow EDSer I am jealous they are seeing you (although obviously pleased on your behalf) I had a tooth out on Thursday, being 11 years older my erosions despite having the same sugar loathing mummy it seems as you, have taken their toll along with other bizarre ramifications such as extra roots on teeth etc that EDS has had. Perhaps its my lack of PHD but my dentist who is South African and abrupt informs me that I am already receiving special treatment due to extreme medical circumstances. i missed an appointment due to me having shingles and being too ill to remember to cancel appointment. So when I arrived on Thursday dentist 'forgot' temporarily that I don't respond to local anasthesia etc and despite six injections pulled tooth out and it broke off. Severe PAIN. he stated that he had forgotten I was the patient with EDS this is not true he was paying me back for his lost time and no money bearing in mind he has already told me mid treatment that I am not worth his while. You hang on to these people bearing in mind you needed not a filling etc you were lucky indeed to receive the red carpet treatment. Lucky you.

To louise bolton - I have a husband and son with juvenile myoclonic epilepsy and understand entirely what you mean when you say people think every type of seizure is of the grand mal variety, if they only knew! To date i believe there is over 120 plus different type of seizures, I think of which and this is only a personal opinion in truth much of the population have had some minor type of which at some time or other they just don't know it. I empathise entirely with your post.

To BG - lets hope they clean your teeth there as despite the fact I am entitled to free denistry it seems not the hygenist even though I paid forty squids for a half treatment last time as apparently the trauma it causes to EDS is mammoth and don't I know it, haven't been back for the second time as the still getting over the first.

By the way my EDS mouth looks like I have done ten rounds with Mike Tyson, and am still on a liquid diet to help jaw spasms as tooth pulling causes jaw dislocations, er yes thought they knew that from last time.

If I have a general anasthetic the norm is board etc. also there is always two anesthastists there to be on the safe side.

Glad your near enough to receive the specialist services and sorry for vitriolic post but EDS dentists and me do not get on.

Perhaps next time the journey from the car park will seem worth it for the respect you are getting.

Am off to blog where I won't feel guilty about using space to bitch about EDS and dentists!!

If anyone medical is reading this, do check very carefully your eds patient;s history and offer prophyalactic (sp) if they have any mention of heart problems at all, endocarditis (sorry spelling again) makes people ill!

Thank you for letting me comment BG.

Veronica said...

It's funny, I always thought that local anaesthetics were pretty hopeless too. The last time I had dental work, I ended up with a nerve block so that he could pull the tooth that needed it. Sure I was numb to my eyebrows, but I wasn't in pain. A far cry from when I was in school and seeing the school dentist. After 5-6 injections (and I was still feeling pain) she told you 'you can't possibly feel anything' and proceeded to fill the tooth anyway. I've had very few holes, but my back teeth were all a little deformed and needed drilling out and rebuilding. Not really my idea of fun that.

Robert said...

I've not seen a NHS dentist in seven years my wife after ten years has now been given an appointment, my young grandson has all his teeth removed at the age of ten, he is now to have all his second teeth removed because we failed to find any dentist willing to take him on private or NHS. Wales ois shocking for dentists.