It's happened again!

magenta

Please bear with me here, I need to get this all out.

March 2007, pain in right side of jaw. Dr gives me antibiotics and gets me tested for mumps! Several weeks later-no mumps.
Pain bad again in the summer of 2007-dr tells me to go to dentist. Go to dentist who says it's probably Tempero Mandibular Joint Dysfunction and hopefully NOT arthritis.
Get referred to Dental Hospital (now Nov 2008) to see Max facial surgeons, who think it's all muscular but do an x-ray just to make sure. X-rays come back with severe wear and tear in both sides of jaw. They order a CT scan to see why I've got numbness in right cheek. Have a mass that needs looked at again in 3 months time to make sure it's not a tumour. At this point I ask what they're going to do about OA-nothing, you can still eat!
My rhuemy says the maxfacial surgeons should be dealing with OA as they don't do jaws :shock: Go back to maxfacial surgeons who say they can't help me anymore and refer me to a TMJ specialist. They do more x-rays and tell me I need emergency surgery to my jaw. Go to surgeon who looks at me and tells me it's all muscular and he won't operate. He sends me back to Dental hospital.

Now Nov 2009,new dentist and no notes of all my previous visits. After 3 more appointments to be told 'can't find your notes', they get a core CT scan done. This shows up severe OA in jaw. Never seen it so severe in someone my age. Get an MRI done.They then refer me back to rhuemy who didn't help me before. Had the appointment today. Was promised a change of meds and maybe injections. Result-nothing! They can't help me, it should be Maxfacial surgeons. No change of meds, no injections-they told me it would be too difficult. They are now referring me back to original surgeons-aaagh! Rhuemy had my MRI results and said it showed extensive damage to both joints and it must be really hard to deal with. I asked about all my meds-do I keep taking them? If you want!!!!! Needless to say, I burst into tears. Asked them about my neck (popping incident) and he's told me to get an x-ray. I'm sure he only done that cos he felt sorry for me. No further forward and at my wits end!

Thanks for reading this, it has helped me getting it all down. Just feel I'm going backwards here when it should be forward. Typical NHS!
Magenta x

jillyb1

Really feel for you . I also have painful flare ups in my jaw and , yes , the rheumy says consult your dentist and dentist says - you've guessed it - consult your rheumy ! Once had a rheumy examine me and say ' gosh, that must be painful ; what do you do to cope with it ?' Do hope you get some answers and real help soon . Jilly

magenta

Thanks Jilly,
The rhuemy asked me how did I cope with constant pain. I said not very well and meds I was on, I didn't think they were effective anymore. He told me to stop taking them i.e Co-dydramol and Amitryptilline and see how I got on. If I was in more pain then go back on them!!!!!
Magenta x

suncatcher

Good grief you are really being put through it. I am really angry for you and upset to hear this is happening :x I hope something is done and quick. Things are not done thoughly now and to much passing the buck we rely heavily on doctors to do there jobs properly i hope they help you all i can do is pray and send u cyber hugs wish i could do more. I will check in the cyber room regularly to check you are ok. x joanne

skezier

Hi Eileen,

hell they muck you about there! Its rubbish, if the pain meds are not working you need different meds not stop taking them! can your gp help at all?

I so hope you get some relief for the pain and also that someone actually does something to help you. Sending you a ((((( ))))) and wish I could say an answer... hang in there flower. Love Cris xx

speedalong

Hi Magenta, what a ridiculous situation - this has been going on years!! They just keep passing you pillar to post and no one is taking responsibility for your treatment. Meanwhile you are suffering and just have to get on with it. Nightmare.

Have you researched? What treatment would you have done asap if you could just arrange it yourself? Would it be a jaw operation? If so, if the surgeon won't perform it - ask for an appointment with a different doctor - preferably a different team - for a second oppinion. Might be worth ringing the helpline to see if they know of any centre of excellence etc for jaw surgery/treatment.

I don't know what else to suggest.

Speedy

woodbon

Hello, This may seem a bit silly, but about 8 years ago, I had a thing that looked like ringworm on my thigh, and I put cream on nothing happened execpt it got bigger and the middle of the ring looked like a yellow buise, my GP said he didn't really have a clue, so sent me to th e dermatology clinic, where the consultant, who was a nice Indian chap, who's wife I used to work with, said he thought it was a granuloma annulare, which is thought to happen with low immune system. He said that also people with diabetes are more likely to get them and people arthritis. He examined my hands and asked about joint pain, which I didn't have did blood tests and a biopsy, just to make sure of the GA. It was succsessfully treated with steriod injections. had to go several times; months apart and developed a few more, some needed treatment others where fine, to small and not in places that I'd show!!! :oops: I've only just remembered it and never mentioned it to any of the docs treating me at the moment. GA's are rarer in this country, he was trained in Ceylon where it is more common. He asked if the other doctors from the clinic could come and see it. Not one had ever seen one and the reation was what on earth is that?! Has anyone on here heard of thisis Love Sue xx Sorry, long post again, but thoguht it may be of interest.

frogmorton

Oh Eileen

Poor poor you

I remember this almost from the beginning...the pain creeping up till you ended up in &e.

I like the wording 'pass the percel' (who said that? It was good) I had similar with my dentist and rheumy but mine is ok the vast majority of the tiome so i can cope.

Eileen you know there are stroinger pain meds if you need them...worth asking the Gp -????

I really cant think of anything else other than will they do surgery when you CANt eat???

Love

toni xx

dorcas

Eileen,

what you've had to go through is just awful. :shock:

they can't just keep passing you about like this... it just isn't fair and meantime you're left in terrible pain and have the worry and frustration of it all. :roll:

would it be worth you making a double appointment with your doc.... print out what you've posted here, as it gives such a clear chronology of events.. and present him with it and ask him to sort it out! Your GP surely can make some phone-calls and speak to these consultants about their lack of responsibility and decision making and find out who is going to help you.

other than that you could complain to the health board/ trust?

I agree with the others that you also need your pain meds reviewed... it is astounding that you were told to stop taking your meds and not given an alternative/ stronger pain med. :shock: this too needs to be discussed with your doc.

I'm sorry Eileen not to have better suggestions... what a terrible position to be left in. :roll:

Iris xxxx

magenta

Hi everyone,
Thanks so much for your replies.
I too feel like they're passing the parcel with me. My hubby is really angry-he's been wanting me to complain about it all but I just want someone, somewhere to say they'll help me. I have thought about going to drs about my pain relief. The last time I tried though, they were very reluctant to change any of the meds that a consultant had prescribed for me.

My lovely Mum is wanting to pay for me to go private-last week I
was adamant that I wouldn't do it. Why should I? I work for the NHS and feel everyone should be treated the same and it shouldn't matter if you have money or not, but that was last week! I'm now thinking (only thinking) about going private cos the pain is unbearable. My neck too is worrying me-have I now got OA ther too? My hubby is going to try and get time off work so he can come with me to my next dental appointment with my consultant-23rd Dec! Just in time for xmas!!! She's actually been very helpful but she's not a surgeon.
I will let you know if anything happens whether good or bad but for now, thanks again for your replies,
Magenta xxxx

Wonkylegs

HI magenta,

sorry I thought I replied to this yesterday but can't see my post so maybe the computer ate it (or littlelegs did )

I am so cross on your behalf, and well if you can't get the different consultants and dentists to talk to each other and take responsibility for finding a solution between them, then I fear that the only course of action must be that you threaten them with a mass invasion from your forum buddies

we've got a virtual deputation ready a number of times, and well they do seem to have an effect .... mostly positive I hasten to add

I really hope that your hubby can go with you to your appointment, but if not then as long as you remind those of us with faulty memory syndrome a bit nearer the time, your pockets will be full of forum buddies, and we'll be there to scream and shout at them when you need us to.

in the meantime .... loads of hugs ((((((())))))))

WOnky

magenta

Thanks Wonky,
I'll wear 2 coats so I can get loads of you in there,
Eileen xxxx