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Head pains

Can anyone help me on this please. I have been having shooting pains in the back of my head for a while and Rheumy sent me for X ray. I have had problems with my jaw for a while (it sticks sometimes). She decided it wasn't TMJ and suggested GP referred me to maxillofacial. They referred me but it was to the ENT Cancer Clinic! The consultant was not amused. However, he still examined me and said he thought it WAS TMJ but he wasn't an expert so I should see maxillofacial. After numerous calls to GP over the last few months they eventually referred me and I have at last received an appointment for 16th October but it says it's for the Oral & Maxillofacial Surgery Dept. It is for Consultation only, would still have to wait for any tests. I don't want any surgery, I just want to know what's wrong! It affects my neck and shoulders as well and am on stronger painkillers which are affecting my work as I sometimes can't think straight. Has anyone out there visited one on these clinics and what happened please?

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Hi. Maxillofacial is by definition a surgical dept. Surgeons who work there diagnose & treat problems associated with the jaw & face. Going to see them doesn't sign you up for surgery - just for getting their opinion. It is normal for any specialist dept to arrange a consultation so they can speak with you and examine you before scheduling any tests they think are necessary. Usually these tests cannot be ordered by a GP or a consultant in a different specialism - it takes specialist knowledge to know what is needed.

I don't have any experience of such a clinic, but rest assured, medical management (ie not surgery) when it is an option is the preferred option, even for surgeons.

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Not answering your question I'm afraid, rather a different slant on a possible cause of your headaches. As you say your neck & shoulders are also affected did your Rheumy not question if it's your neck causing your headaches. It's a pretty common occurrence, I have it, OA in the neck (cervical spondylosis) which can cause cervicogenic headaches. Shooting pains up (& down) my neck are accompanied by horrible headaches which I can draw as a line from the base of my neck, right over my head & ending in a 'T' across my forehead. They've been easier since my GP prescribed BuTrans patches but I do still have breakthrough pain which we're still trying to find the right med for.

Just another angle if your Rheumy's concentrated on your jaw being your problem. Either way I hope the reason is found, it's enough coping with RD without having add-on issues.

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HEAD PAINS.......yes I can sympathise with you there. I had pains in my head so bad that I thought my head was going to explode. I presented at my Rheumy clinic, after a phone call about how bad my condition was on the day, only for my lovely Rheumy nurse Bronagh to ask me if I had heard a clicking sound at anytime! I had such a bad full body flare on the day that I was like the shape of a ?. This I have to say took place when my disease was not under control. I was waiting at the time for financial approval from the NHS for Bio's. This happened three times while I was waiting!!

Anyhow Beauty this, in my humble opinion, does come from severe pain in the neck and shoulders but also from jaw problems to make the situation worse. This has been my experience. I was refered to a Dental Surgeon who did an x-ray and ten minutes later was able to show me the x-ray and confirm that I did indeed have extensive damage to my jaw (both sides) from RD.

He went on to tell me that although I had had several instances where my jaw had completely locked the condition of my jaw was not yet severe enought to be replaced. I live in Ireland and he told me I would be sent to London and have the replacement done there.......not looking forward to that at all I can tell you!

I'm doing grand on steroids and pain relief via tramadol and loads of parcetamol. I see Dr White every 3/6 months and so far I'm still doing alright. I wake up with my jaw a bit creeky but it eases as the day goes on and the tabs kick in. Eating and visiting the Dentist can sometimes be a problem as my jaw no longer opens very wide (some might say that is a blessing but it still doesn't stop me from talking!!). As you can see I do go on a post go on forever.......

Anyhow I hope I have helped you a wee bit from my experience.

I just love Scotland, I love every bit of it. The Scots are just lovely.....I always say that they are just like the Irish with a bit of a different accent. Take care darlin. Jean XX


Thanks for your replies. It's a relief to know that surgery can be avoided as I don't react well to anasthetic!


I have had awful problems with my jaw for over 15 years now before being diagnosed with RA.

Pain can be hideous when it goes. One day am sure my jaw will actually fall apart :D

I was told an operation would never be recommended as usually unsuccessful and irreversible. :( (England)

I had the plastic bite guard thingy - but that eventually went in the bin.

The only thing I do which helps a little is push my bottom jaw out as far as possible with the pain and stroke under my chin, pushing upwards quite firmly, at the same time relaxing as much as possible.

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