ATFP stands for.........
Atypical Facial Pain.
And it's a syndrome.
And I'm to be tested for it.
For 5 years I have had a pretty much continuous, kind of itchy ache, in my bottom front teeth.
This has, at times, been really unpleasant, but it's like all things like this in that you get used to constants.
When it first began I was treated for gum disease to the tune of £600.00. It did nothing to alleviate the pain whatsoever, and this lead to a referral to my local hospital.
The diagnosis then, was that my mind was playing tricks on me, in as much as there was no reason for there to be pain and that the mind can fire off signals of pain for no good reason.
I was prescribed a kind of anti-depressant which blocks this kind of signal, and for 3 months it really helped.
Then it was slowly creeping back and has been with me since.
I can deal with pain, but it really pisses me off when I have no other problems with them. I have only one filling and a crown. That's it. Never had a tooth removed either.
Recently I went to a new dentist to have the crown replaced and explained this situation to her and she referred me to the dental institute at Guy's Hospital, which I attended on wednesday.
The consultant was thorough and sympathetic and disagrees that this is my brain making false signals, but that it could be this most rare and more often than not misdiagnosed condition known as Atypical Facial Pain Syndrome. He has only seen 2 cases of it in his career so far. (See, Mags, something was bound to be going on behind the scenes of my happy smugness!!)
I've given a link for anyone who wants a read up from the folks that know more than me.
http://www.londonpainconsultants.com/articles/2006/10/22/atypical_facial_pain/
http://www.jaws1.co.uk/other_types_of_facial_pain.htm
I'm really glad that there will be some proper tests done now, and once I've been scanned and probed and questioned I'll know at last. It could be 3 months until I am seen but compared to the length of time I've lived with it, I'll cope.
Anyway the upshot of all this is that I really bloody hate dentists and want everyone to know how brave I have been.
posted by Kayfer Kettle @ 10.11.06
21 Comments:
Hello. Great to hear your facing it bravely. Dentists are dreaded by a lot of people, me included but that fear is soon put in perspective once you realise the benefits which will follow after the treatment. All the best with it!
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I'm glad you've got a diagnosis : in my experience, being able to put a name to something actually does help.
Good luck with all the tests.
(I deleted my last comment because of a typo)
Well thank you Ja & LPJ.
Not only is it good to know that at last I'l have this pesky ache sorted, but that there are really other people who are scared of these barbarians that we refer to socially as 'dentists'.
Hell has a special place reserved for these people!
K xx
Kate, I am so sorry that you have had to put up with this and I shall follow up the links later on in the week....and as I sit here typing this I am in total agony on the whole of my left side of my face from neck to eye brow, I suspect an infection. So total empathy from me.
I don't have a dentist at the moment so I don't know what I am going to do about this, possibly try and blag something off the doctor. I've had it three days now and it gets worse with each day.
There are no NHS dentists for miles and miles around here and I refuse to pay the £25 per month that the local dentist wants just to keep you on his books. Yes, that's right, £25 per month for nothing other than you are on his books. All consultations and treatment are extra plus children have to be private patients too and he never did anything about my worsening dental problems. I did find one 6 miles away but then found out he was a nasty liar. He referred me to Birmingham Dental Hospital because I do have pretty advanced gum disease. I never got an appointment and dentist said that it was because your head had to be hanging off to be seen there. So I pursued this a little further. The hospital told me that I didn't meet their criteria so I asked them what the criteria was. The pooh pooh then hit the fan because they sent me the correspondence between them and my dentist and of which the lazy B couldn't be bothered to tell me about or give the hospital the information they wanted.
I don't mind paying for treatment but I have been told that the treatment I need involves surgery and about 5K!!!! Sorry children no holidays for the next three or four years...yikes.
So Kate, I wish you well with the tests and the treatment and you now know that you will always get a sympathetic ear from me.
xxxx
Oh my darlin Mags!
I am really sorry that you're in pain. It's the worse kind of pain too - all consuming and inescapable in ways that other common or garden pains are not.
£25 a month? For nowt? It takes the piss.
I have been so lucky to find this dentist that I have now, but I travel 15 miles to see her all the same. I live in Bucks, she is in Middlesex. She has done so much work on my poor mum's mouth, and has been so kind and non-judgemental of my mum's dental problems, that I thought I'd give her a go. Very glad that I did.
I believe the original hospital consultant was barking up the right tree, but did not extend his thinking to it being an entity in itself and so it has gone on far longer than it should have. All the while I have thought my teeth were going to have to be removed. It's been hard going sometimes.
Thanks for your lovely words Mags. Hope your pains are gone sooner than soon.
K xxx
£25 a month Mags???????
Sorry to harp on, but surely that's got to be illegal???
If it's not, it bloody well should be.
K xxx
Kate, you're welcome. I wish it was illegal. They are the only local dentists and to be honest it's local that you want when the fear and pain factors are involved. If you got two free consultations a year thrown in plus part of any treatment or if it was insurance then I would pay it but I refuse to line the pocket of a greedy B.
Blagged it with the doctor because my glands were all swollen. She said I really ought to go to the dentist but she was happy enough to prescribe me some antibiotics. No booze now though!!! Gives me a bit of time to research dentists once again.
Let us know how you get on. Fingers crossed.
The old 'get pissed or get rid of the pain' dilema eh Mags?
It's a tough one.....
K xxx
My dentist is very competent in terms of his actual dentistry but his "chairside manner" is useless.
In the summer I had a particularly painful filling done and halfway through the procedure he said "Exciting, isn't it?"
I got struck off his NHS list for non-attendence, £90 the filling last time I went. And I didn't really need the filling it was an old silver one that he though would be better in white! I haven't been back.
NHS dentistry is in a shocking state. In Defoes Journal of the Plaague Years he lists the causes of death in one particular parish, several hundreds die of plague not surprisingly but a handful die of "teeth" - we are reverting into medieval barbarism!
(Rant over!)
Hope you feel better soon. You too Mags.
LPJ - I'll be shocked by that once I stop laughing!
K xxx
It's true Gav.
Bad dental hygiene, whatever the cause, actually knocks years off your life. In most cases, toxins become involved, and it is reported that simple flossing can add 5 years to your life if done reguarly.
The cost and scarcity of good dentists is costing lives and that's got to be wrong.
K xxx
Glad you've been brave Lena and I hope all is still well...been a while since I've posted here so forgive me for that...only that :-)
When you have a mo' would you mind having a look and kind of testingat this message board.
Full on criticism gratefully received as always!
How's it going Kate? Well I hope.
xx
Hello Mags,
I'm good thanks, and have a date for my tests in early Feb.
Oddly, since I had the appointment, the pain is only there when I think about it. I have the thought and the pain passes through. It's much milder too. Not sure what it all means, but I at least have a date when I shall find out!
I hope all is well with you and yours as we hurtle towards the festivities.
K xxx
Merry christmas Kate, to you and yours there in paradise. Hope that you have a lovely time.
xxx
Merry Christams Kate! Hope to see you blogging and posting in the New Year.
I have AFP and a host of other things. I am also highly allergic to most of the drugs they try for controlling it. What fun! I ended up on Methadone for the pain and Xanax for the anxiety and now they're trying Zoloft since I can't take Prozac any more.
Good luck to you.
Hello there Froggy.
I'm really chuffed that someone has discovered this post that actually knows where all this business leads.
Methadone???? Sounds a bit heavy duty and as far as I am aware, actually rots your teeth! Is this given as a liquid or a tablet?
My appointment has been delayed until mid-march, so I shall have to deal with it until then, but I'm not sure I fancy being off my nut on such heavy drugs, and I certainly don't like the idea of having to take other drugs to combat the side effects of the first.
Time will tell I guess, and as my appointment is delayed until mid-march, it's a case of waiting.
Oh dear. This is a tad worrying....
KK x
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