I have had RA since the 1980s. Have other autoimmune diseases as well as osteoporosis. I requested an MRI scan of my lower spine in 2020 because of extreme pain and losing my mobility, aged 74. This showed I have a fracture of the sacrum on one side of sacrum which was referred to as Sacral insufficiency at S1.
I saw a spine surgeon who told me he could not do anything that would help me. His only recommendation was to buy a walker on wheels and walk, walk, walk. Never ever suggested there might be another possibility to help me. While I understand he was not able to offer another procedure I would have thought he should have known there was another possibility. I must admit I was rather shocked he appeared to throw me on the scrapheap. I burst into tears once he left the room feeling totally overwhelmed as well as depressed.
The suggestion of a walker was a useless idea. Bought one but couldn’t use it because of my hands being so painful. Couldn’t open it, couldn’t fold it and carry it to put into my car in order to go out shopping locally or for a lovely short walk in the countryside. So this was sent back. Meanwhile my mobility hence independence have decreased so much I can hardly do anything. Standing up is both extremely painful and tiring. It is both frustrating and frightening, more so because I live alone and family members live a long way from me. I intend to fight to keep my independence and what is left of my fast deteriorating mobility. Indeed I have a very poor quality of life, unable to do much, sitting alone in my house, not seeing many people. Yes, it gets depressing having to live with such a level of pain and being so restricted physically when my mind tells me to do things all the time as I used to. Was very active and independent. Sitting down and lying down are difficult too, I dread going to bed.
Out of despair, I have done some research to see what could be done to relieve the pain in my lumbar spine and allow an increased mobility. I discovered there is a non surgical but highly skilled procedure called SACROPLASTY. Basically someone injects a bone cement into the fracture under MRI scan guidance. This is a fairly new but not recent procedure. I read some papers stating that it doesn’t help in a small number of cases but in the majority this stabilises the fracture hence relieving the pain almost immediately (taking time nevertheless) and gives some mobility back. The only side effect noted so far in a number of cases is that sometimes the bone cement may leak into the surrounding areas without causing any other problems up to now.
To me this sounds acceptable and gives me a glimpse of hope that it could perhaps give me back some quality of life I have not had in many years. So I wonder if anyone has heard of this procedure and perhaps has had this procedure or even knows of someone who has had this procedure. I would welcome your feedback.
I have noticed this is only available at a few NHS hospitals in the UK. One is located in Newcastle upon Tyne another one in London, I live in the midlands close to Derby and Nottingham. My GP found that one of Nottingham hospitals use this procedure and wrote to this hospital but her referral was rejected. All to do with money and only treating people living in that medical area. Yet I was referred to a London hospital many years ago for another health issue which was then resolved.
This is quite disappointing. I will keep on fighting to try in finding a specialist who will be willing to give me an assessment at least and hopefully much needed help in relieving this horrendous pain and preventing total mobility loss. I am very scared naturally.
Another request if I may: I am due to see a hand surgeon next Wednesday 1st June. My fingers (and wrists) are extremely painful, deformed and am losing sensation. I have had steroid injections in my finger joints (very painful), on two occasions, giving me temporary relief. Nevertheless, grasping or holding things is most difficult. I often drop things. I do not want my joints to be straightened and lose mobility. I have read there are silicone joints replacements which give full mobility. Therefore I would appreciate to hear from anyone who has had this type of finger joints replacements before I see the consultant next week.
Sorry for this long post and thank you for having the patience to read it to the end. I look forward to hearing from you. Thank you again.
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JGBH
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Glad to see you have found your way from the NRAS site to Bone Health. I hope someone on here can answer your questions about sacroplasty. I’ve just had a thought that it might be worth contacting the ROS link on the right hand side to see if they can help you. They also have a phone helpline that might be worth trying.
My daughter came up unexpectedly from Suffolk yesterday and has helped me…. Thanks for other suggestions. Might just phone the ROS but they might say they recommend I have treatment for osteoporosis… which, after my experience, I have no intention of doing at the moment. No response from Bone Health community so far… Fingers crossed.
JGBH I seem to be going down a very similar route. So far treatment has been extremely limited with only one steroid injection to my thumbs. Like yourself, the pain is becomiing progresssively worse to the point when I can barely use either hand, and am constantly dropping things. IF you are lucky enough to find anything that helps considerably and longterm, I would love to hear from you. Gordon
Hi Gordon,You have my sympathy… I understand how frustrating, debilitating and painful this is.
I saw my hand surgeon last week. First of all I must tell you there is a highly specialised hand centre at my local hospital, at the Derby Royal Hospital, called the Pulvertaft Centre. You can check this online.
I told the surgeon I didn’t want my finger joints to be fused but wanted to have arthroplasty that is joints replacements with a type of silicone joints, thus allowing some mobility which fusion doesn’t. This can only be carried out on fingers, not on thumbs. Also only 2 fingers can be done at a time. Recovery is long, up to 12+weeks and you can use your hand at all during that time (only doing hand exercises)/and no driving. So it’s quite a problem when one lives alone…
Regarding thumbs, I have read one surgeon at this centre replaces the triangular thumb joint with a silicone type joint too. But I have not discussed this with my surgeon. I have read that usually they simply remove that joint…
Sorry I can’t give you more information but perhaps you could do some research online in order to find out what is available. Where do you live? Not all hospitals have a specialised centre.
Are you under a rheumatologist? If you keep on dropping things as I often do, you might need to have a nerve conduction test. Your RA consultant could refer you for that procedure or even your GP. You’ll probably need to push for it.
I have found much help from a few people from HealthUnlocked.
Do hope you can find a way forward. Good luck and let us know how you get on.
Sorry it is a late response but I have not been well and my hands and whole body are so painful. Am sure you understand what I mean.
Good evening JGBH. Many thanks for your reply... it's certainly given me a lot of food for thought. I live in West Wales and so far is seems that any specialised treatment is limited. I knew nothing about some of the procedures that you mention, so have not yet enquired about them. Nor have most even be mentioned to me. Unfortunatly in my case it's not just my hands. I had a total knee replacement about 10 years ago that left me in more pain than I started with. I've since had two total revisions ( complete knee replacements) , both have failed, and at times I can barely walk.There's now nothing else left in the pipeline. But it doesn't end there. For many years I've suffered with mild back pain. This has progressively worsened, and I've now been diagnosed with osteporosis with 2/3 cracked vertebrae. About 6 years ago I was given a cotesone injection to the back that relieved the pain considerably but only lasts about 6 months before it wears off. Initially the comsultant recommended a repeat every 6 to 9 months, but it's now almost 3 years since I had the last one, and still awaiting to hear when the next will be.... perhaps when I reach the age of 120 !!! and long since buried.
But I'm NOT giving up, and force myself to continue with as much DIY as I can. Plus I carry out PAT electrical testing for a local charity shop. I've been told that things that might otherwise be thrown away, can frequently raise as much as £50+ / week I get a lot of satisfaction from that.
All the best, and I'll try to keep you updated ---- if I remember !!! Gordon Davies (age 75)
Good Evening Gordon,My goodness, you have not had much luck with with your full knee replacement surgery and consequent back problems due to osteoporosis and extremely painful and debilitating vertebrae fractures.
Have you ever been diagnosed with RA (rheumatoid arthritis) or other form of arthritis?
To me it does sound like the service you have received is pretty poor. I understand the Welsh health service is not great, it’s a lottery ticket where one lives unfortunately. May I suggest you try and get help from an English hospital if you live close to the English border, if it is possible for you to get help in travelling there, perhaps there is a volunteer hub where you live that could drive you there, as there is such a volunteer hub where I live?
I do think you need better care, at least a second opinion. It is quite appalling you haven’t been looked after better. Because of that I doubt your hospital would have a specialist hand surgery centre offering a choice of having finger joints replacements (arthroplasty) as well as joints fusion.
May I reiterate you will need to ask and insist on getting better treatment. Don’t let anyone fob you off, be prepared before you speak to a doctor and stick to your guns. If you wait to be helped … as you’ve noticed you could wait for ever.
It has been my experience that one has to do research, make thorough notes (perhaps ask someone to write or type your notes and print them if your hands are too bad to do so) and tell them politely what you expect from them describing how difficult every day life is difficult for you, how bad your quality of life is. Don’t be ‘brave’ by playing it down… because you’ll never get the help you so much need. Never be intimidated to remind them when they promised to do something and then forget. Don’t hesitate to phone them/send emails/send letters when you don’t hear from them after a few weeks otherwise you will be forgotten as you have explained. This isn’t acceptable when you suffer so much and you’re losing your mobility and independence. It is not often a medical professional will tell you about different options so it is important to do your research as fully as possible and ask for the best option possible. I have noticed that if you’re older than 60 and/or have multiple health issues, doctors don’t seem to be that bothered (yes, there are exceptions) so you need to be proactive. It would be good to take someone with you during the consultation, as a witness, if allowed again because that hasn’t been allowed since the pandemic.
Of course the NHS is struggling and has been for a long time, plus the pandemic has made the situation worse BUT it looks like you have been neglected before Covid came along. If you don’t fight (politely but assertively) your corner you will always be pushed to the back of the long queue and conveniently forgotten. I really feel for you and what has happened to you because I too am losing my independence and my mobility plus live with incredible pain 24/7. It’s demoralising and frustrating. Pain is exhausting to cope with as you know.
I too had 2 full knee replacement operations in 2017 and 2018. It hasn’t been easy. I too have severe osteoporosis (fractured pelvis - sacrum) need hip replacement and fingers joints replacements too, living alone makes it more difficult of course. I am 76.
Whilst it is good for your morale to do DIY, being busy, don’t forget that when you are in much pain it is important to rest. I understand how difficult it is to do that and so frustrating but don’t make matters worse by forcing yourself to do things all the time.
Do hope you will a way forward in trying to improve somewhat your quality of life. Don’t give up and good luck.
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