Advice regarding ra and surgery

Hi just wondered if anyone has any advice?

I've been suffering from hand pain for a number of months. My consultant thinks I may have RA. My RF is 29, mri arthrogram showed fluid on my hand/wrist, wear and tear along with space between my radius and thumb (if that makes sense?). Im on the waiting list to see a rheumatologist and have been booked in for another MRI as the last scan was unclear.

Is it possible I could need an operation to repair any damage caused. If so, do I need to wait until I see the rheumatologist or can the orthopedic surgeon make the necessary arrangements beforehand?

Thanks

Ashley

11 Replies

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  • Oh don't think about surgery just yet. Sounds like you are still being assessed as to what is going on. I know its stressful waiting for results and you start thinking all possible scenarios. You may be able to be treated with meds and surgery may not be necessary. I an not sure what you describe but it may not be as bad as you think. Keep positive. I just realised why we are called patients...we need so much of it with all the waiting we have to endure.

  • Hi Cathy

    Thanks for the advice. I didn't think it would take this long and still not have a firm diagnosis (7 months). I'm in pain all the time and desperate to see the rheumatologist to start some medication. I feel so low and teary I can't wait to feel normal again.

    Ashley

    X

  • That is a long wait. Get angry and push them! No one should be left in pain without knowing why or how it can be helped. I think waiting times is a postal code area thing which doesn't help. Be strong and determined.

  • I've raised complaints which haven't done me any good, I keep ringing to chase up the rheumatology appointment. All I'm told is that I'm on the waiting list. They say I'll get an appointment before July! Not sure what else could do. Its do frustrating, especially how long it's taking. I worry that I may suffer permanent damage.

    Ashley

  • Why don't you call the NRAS helpline. They are very kind and supportive and should be able to give you advice on how to speed things up. nras.org.uk/helpline

  • Hi, don't know why I've not rang them before. I'll give them a call tomorrow 😊

    Ashley

    X

  • Hi Ashley

    I would certainly see a rheumatologist before contemplating surgery.

    Do you have an appointment or are you still waiting? Has your GP referred you?

    Don't know how much experience you have of the NHS but one thing (as Cathy says) is that those who shout loudest get most. That doesn't mean literally shouting (or they'll likely call the police 🚓) but pester them. Phone and ask for a cancellation, tell them you're worried / in pain / depressed. Never play things down, the other way round. Make sure they know all of your problems and how your daily life is affected.

    Another option you have is private consultations. You can choose which consultant you see, whether they tell you that or not. If you have private cover through work, use it. If you don't then another option is to see a consultant rheumatologist (do some research and find a good one in your area), go for an initial consultation privately (might cost you a couple of hundred pounds, which sounds a lot but what price your health?) and tell them you can't afford to carry on privately. They will then transfer you to their NHS list. Don't worry about this process, it is very common practice and could save you months.

    You will need a referral letter from your GP for this, they should be ok with it if you explain the situation. You should be able to go in to your GP with a name and ask to be referred to that person.

    Hope some of that is useful.

    All the best.

    Ade

  • Hi Ade

    I'm on the waiting list, not got an appointment yet.

    I'll ring the consultants secretary and hassle her in the hope things move soon.

    Ashley

  • Hi Ashley

    Yes their secretary is usually a good place to start. If you haven't spoken to him / her before don't be surprised if they seem snotty!

    In my experience consultants' secretaries can often be a bit aloof until you get to know them. I may have just been unlucky, or maybe they just don't like me😢😎

    If they say your appointment will be a long time away don't forget the private option (if you can afford it). No harm in asking just so you know if it is an option and how much it would cost vs how much time it would save.

    Being in pain is so much worse than being in debt. 😱

    Regards

    Ade

  • According to the NICE guidelines: "Rheumatoid Arthritis in adults: management", "Section 1.1.1 Referral for specialist treatment" you should be referred "urgently", if the small joints of your hands or feet are affected.

    If it is RA, the sooner you get RA diagnosis and treatment the better. Direct your GP to the guidelines, available online here: nice.org.uk/guidance/cg79

    and ask them to refer you to the local Rheumatology Department as an matter of urgency. I got delayed in my diagnosis for many months, with one thing and another, and my hands are damaged as a result, so my advice would be to get onto it pronto.

  • I've still not received a diagnosis, it's been 8 months. I've been passed from professional to professional without success 😔

    I've written a letter of complaint to the hospital concerned, hopefully it will expedite the whole process!

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