Sacroiliac joint

I'm desperately hoping for some help advice for my daughter. She has just turned 20yrs and has suffered delibating sacroiliac pain for 3 years now. She has had numerous injections, rf denervation (which made her pain worse) and is now having prolotherapy treatment.. I'm not sure this is working? She is so thin and her posture is terrible. She enjoyed ballet, sport etc up until 3-4 yrs ago. She's on gabapentin, co codamol and now anti depressants. She's currently being treated by a pain consultant and waiting to see a orthopaedic consultant. I have a feeling they may suggest fusion but she's terrified of having such major surgery. Any advice is greatly appreciated.. Thankyou from a worried mum

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  • Hi,

    May I ask how you know it is the SI joint, usually denervation would improve things not make them worse as they are individually targeting the nerves supplying the SI joint.

    I presume the injections helped - the risk is they flood the area with a local anaesthetic which can travel to say the facet joint and provide a false positive - at least this was the way it was explained to me.

    A good antidepressant might make all the difference to her pain.. I wouldn't dismiss them. Has she tried anything other than co-codamol ?

    Minimally invasive surgery for SI joint's are now popular especially in the US. I'm not sure it can be classed as major surgery - some are in and out the same day, others stay only overnight.

    The way I understand it is that crutches are used for a couple of weeks minimum, but the pain from the SI joint is often gone as soon as patients wake up, and they only need pain medicine for the first week post op - or equivalent.

  • Hi janeykate worried mum

    I too endure this pain; for now, the onlyadvice I can give is - maybe a medication review? Something a little stronger to cover the period until she sees the Orthopaedic consultant. If fusion is suggested, it can be declined and you both push for a review of everything!

    Does your daughter see a physio? Some ideas may emerge from that to help her manage a little?

    I'm assuming that she's had x-rays and an MRI to confirm that it's 'only' (I don't say that word lightly) the SI joint and not something else going on in her pelvis, hip or back?

    I know, so many questions which may be blatantly obvious but I found that by separating each area definitively that I could then start to ask about individual treatments & therapies.

    Definitely worth asking for a medication review; maybe separating the Paracetamol and Codeine; can she take Ibuprofen safely? Increase the Gabapentin dose if she's not already at the max? Hydrotherapy? Massage?

    I/we totally understand the unrelenting pain and what it does to your daily life. You'll get other suggestions I'm sure but from your point of view, having to watch your daughter suffer is hard too. All you want is to take the pain away or at least reduce it. I don't have a miracle cure unfortunately but hopefully I've given you an idea of where to go from here.

    RJC x

  • I'm due to have my first injection in less than two weeks. Even if it works it's temporary. I'm in the UK but have watched you tube clips of the SI joint Fusion treatment and I would love to have it. There are clips of people up walking and without too much pain the next day, which reduces after a week. Nothing like the pain prior to surgery. They have their life back. I've suffered for over 20 years so I would jump at the chance. It's not 'major' surgery. I had surgery to remove a tumour from my liver last year, now that was major! Have a look on the Internet and research. Better to be fully informed when making a big decision.

  • Hi, I suffer with si joint syndrome, and some days cant even weight bear. I am taking Gabapentin and mst, but I did find that acupuncture helped? Very often it is (as in my case too) the muscles surrounding the si joint ( the glutes), become so tight and painful and therefore constricted, that they pull around the joint. It is worth doing exercises for these muscle or maybe try and muscle relaxant like diazepam.

  • See an Alexander Teacher. They can help with posture and muscle control problems. Sleep needs to be looked at. Sleep is important for fine muscle control. Muscles have an influence on pain and discomfort.

    Hope this helps.

  • Can I ask if your daughter's hips, lower back, legs or tailbone are paining her too ?

  • Get her to a rheumatologist ASAP ! Chances are she may have an autoimmune reason for her pain

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