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.
Written by
JGBH
To view profiles and participate in discussions please or .
Sorry to hear you are getting no help for your back. I have fused SI joints which get very painful, so can understand your frustration at not getting any help. Also, I have just had two finger joints re replaced by a plastic surgeon at St George’s hospital in tooting who specialises in RA hand surgery..The first time I had this done was approx 20 years ago, so they have lasted well. The index finger was very unstable and the middle one had sublaxed. He has done a marvellous job. I prefer plastics to Orthopaedics as they are far more delicate with the way they operate. Good luck.
Thank you for replying. I did confuse your reply with that from Maureen Gibson…. Reading eagerly for replies to solve my problem! So yes i Am impressed with your fingers. How many silicone replacements did you have and can you use them well? I assume recovery was long and painful? How long did it take you to recover from surgery? The surgeon I will see works in a special unit called the Pulvertaft centre. Does this mean anything to you? Best wishes.
This is the 2nd replacement. I had the surgery at the beginning of February. It is a 3 month recovery time. The first replacement surgery may take longer to recover though.
Sarah, thank you again. So are you now able to use your fingers properly ? I assume you needed help with everything during the recovery period? May I ask how many joints were replaced, and I assume it is silicone replacements? Can several joints be replaced at the same time? I feel I need to be prepared before seeing the surgeon.
I can use them better now as they are stable, I have minimal pain now. My first op they were done 2 years apart, but this time, I asked for them to be done together. Wasnt going through the Op twice. Lots of exercises to do - very important. I did need lots of help - luckily I have a very sensible husband. You can’t do anything with the hand for some weeks while it settles in - apart from exercises.
Thank you again. So do I understand you had both hands (all fingers?) done at the same time ? Would you recommend this operation then? I know we’re all different. Pleased you are able to use your hands better. Wonderful to have someone helping out while you couldn’t use your hands with the exception of doing exercises to help recovery. You said some weeks… 8, 12. More? Are you able to drive now? And cook, carry light bags when shopping etc.?
One hand - two knuckles done (twice). The surgeon recommends 12 weeks recovery, I suppose it depends on how you cope with the surgery. This time round it took less than the 12, I expect that was because they had been replaced before, so a lot of the work had already been done. I am lucky that we have a first class plastic surgery team locally. I definitely wouldn’t use orthopaedics - but that’s my choice.
Thanks again Sarah. May I ask at which hospital you had this surgery done? Do you mean the operation was carried out by a plastic surgeon as opposed to an orthopaedic surgeon? The surgeon I will see is an orthopaedic surgeon dealing with hands and arms but he’s part of this Pulvertaft group at the hand clinic of the hospital, supposed to be extremely good for hand surgery. My concern is that when I saw him a few months ago (regarding post surgery for arm nerve decompression) he mentioned fusion when I said I needed help with my hands… so not sure … might have another battle on … hope not. I am warned out by trying to find help. Jocelyne
I had the surgery at St George’s in Tooting. I did have a consultation with an orthopaedic surgeon at Croydon University Hospital. They wanted to fuse the joint so I went for a 2nd opinion at St George’s. It does depend on the surgeon and the state of your hand to find whatever is best for you of course. Everyone is different.
Sarah, thanks again, You did mention St George’s in London and I forgot. I am anxious as I have to try and find favorable solutions for 2 major health issues at the moment. A little overwhelming.
Not a problem. I’ve lived with RA (and newly diagnosed with AS) for 40 years. It’s all very daunting, but there is a lot of info out there now, which really helps with allaying your fears. Good luck with what you decide to do 🤞
RA is a nasty disease. I feel for you. I was eventually diagnosed in my late 30s in late 1980s but in fact I remember getting symptoms when I was 33… I was so ill I spent nearly the whole year in hospital. I lost my job too. I didn’t know anything about RA then. The best biologic treatment I have had was Enbrel (Etanercept). It gave me my life back, well nearly, for 14 years but stopped working when the OA pain in my knees became unbearable and I had to stop using Enbrel before getting my 1st total knee replacement in December 2017 then my 2nd TKR in July 2018. I was then put on another biologic, an infusion form which didn’t work at all, rien was given a Jak inhibitor in pill form… didn’t really help either and am now on Tocilizumab weekly injections. It does help but the RA isn’t really totally controlled. There aren’t many other options left now. I cannot tolerate Methotrexate, it made me feel so I’ll, like my body (liver) was being poisoned. So since I have had my TKR operations I have not been very well. The knees are ok, but do swell up still. Which treatment are you getting for RA and AS now? Feel free to pm me if you wish. It is hard living with autoimmune diseases for which there is no cure, J
I worked as an orthopaedic nurse for many years, and one of our spinal surgeons performed kyphoplasty on lumbar fractures of osteoporotic fractures, with good results. He doesn’t do sacral fractures, but the results were good with patients going home the same day. It was used exclusively on osteoporotic patients who had compressions fractures. I also nursed patients who had metacarpal phalngeal joint replacement, which is the knuckle joint. It was reserved for patients with end stage arthritis. It did require a very intensive recovery with a hand therapist, so it requires a lot of motivation from the patient to push through the exercises. Generally these days out of area referrals are only accepted by national hospitals, who are classed as a centre of excellence, and generally only if the service is not available within your area. This has become more of an issue as post covid, most hospitals are struggling to meet the needs of those patients in their own catchment. My gp did refer me to Barts 3yr ago, which is a 2hr train journey. I have a rare condition which the local hospitals weren’t experienced in, so it can be done. Your CCG may be able to confirm if they will find a sacroplasty out of area. Good luck going forward
Thank you for getting in touch and the information provided. My fracture is in the sacrum… would the surgeon you worked with have performed kyphoplasty on a sacral fracture as opposed to a vertebra fracture? I am most impressed by the look of your hands… can you use them easily, is mobility and holding, grasping good?
The surgeon I will see is part of a special unit called The Pulvertaft hand centre. Does that mean anything to you, as an ex orthopaedic nurse? Thank you again.
PS: Maureen, sorry just realised I confused your reply with Sarah… Am so eager to find solutions that I read too quickly through the answers. Best wishes.
Unfortunately I never seen him perform on sacrums. Purely vertebral fractures. Often myloma patients to try and regain some of their height from multiple fractures. I think you would need to seek out someone who has experience in sacral fractures. I’m not familiar with the hospital you mention, but I’ve been retired 4yrs.
Thank you again Maureen. Yes, I think only a specialist in sacrum fracture would/ might be able to help. The Pulvertaft centre is situated at the Derby Royal Hospital, 12 miles from where I live. This is qualified as a centre for excellence for hand surgery. However, I am concerned they will only want to offer fusion of knuckle joints, which isn’t really great as I would like to retain some mobility in my fingers. Are we talking about the same thing, that is silicone joint replacements? Do you know if these can be done on several joints at the same time ? Is that sort of surgery difficult and how long does it take to recover, to be able to be independent again? Living alone I would have to plan ahead regarding my recovery. Sorry for bombarding you with so many questions. My need to know as much as possible before seeing the surgeon (who incidentally released a compressed nerve in my left arm last September) is to be prepared so that I am able to negotiate the best possible outcome for me.
Yes you can have several joints done on the same hand. They tend not to do both hands at once, for obvious reasons. There is a lot of hand therapy required after the wounds have healed. Recovery takes around 8-10 weeks, and you tend to have slightly less movement than before, roughly regain about 2/3 of the movement. Good luck with your appointment 🤗
Should have read your reply before reading Sarah’s…. I have just asked her more questions… Of course only one hand at a time… so one is able to do simple tasks… So it takes about 2 and half months to recover… so much help needed… that will be my problem but … must see if the surgeon will be willing to do this rather than fusion. So how much hand therapy is required ? Can you drive and carry small light bags when shopping ?
Am dreading the appointment really, as would rather not to have any operation but needs must… Thank you.
Dtiving is not advised for the first 6 weeks, and your insurance is unlikely to cover you unless your surgeon advises otherwise. The same applies for carrying objects in that hand, as you would be putting strain in the new joints.
Thanks again for this information. Making notes. I really appreciate all the information I have be given by everyone. Am naturally nervous and need to feel better prepared before meeting the surgeon on 1st June. Jocelyne
Have you thought of posting on the Bone Health group to see if anyone on there has had experience of sacroplasty? It seems that pain relief and walking / gentle exercise is generally about all that’s on offer for sacral insufficiency fractures.
I know in the year since I fractured I’ve gone from being in total agony and absolutely hobbling around to not being in much pain and being able to walk normally and I’ve built up the distances I can do now.
Any advice I got was from a physio who deals with spinal rehab. I felt my GP wasn’t really interested - besides I know I definitely don’t want anything invasive done. My rheumatologist is only interested in getting me to have a bisphosphonate infusion because I stopped taking their alendronic acid after four months because it made me feel terrible ill all the time and I know people who have taken bisphosphonates and still carried on fracturing.
I agree with you - once you’ve got an SIF you are pretty much on your own. I hope you can find someone to point you in the right direction.
Thank you so much for your kind advice and comments. Will try to post on Bone Health… but am not great on IT technology and don’t know how to copy and paste from one site to another so will have to redo the whole thing… I am having physio at the moment started it a month ago but couldn’t carry on because of extreme and I mean extreme pain. So yesterday the physio started me on different exercises so hope I can carry on with this programme. Yesterday was relatively a good day…
I can’t walk any distance really, standing up is most difficult…. I do walk inside the house and outside in the garden with help from a stick for support. Can’t do that for long though. Am pleased you can walk a little more.
I refused anymore drug treatment for osteoporosis, it was one of these drugs (Prolia or Denosumab) that caused my fracture in the first place… I was on it for over 3 years and when I had to stop using it for invasive dental treatment no one told me about the rebound problems… I didn’t know then. Furthermore as you know, we can’t be in such drugs for more than 2 years or so AND THEN have to go onto another one …. ad infinitum…. So hardly the panacea they claim to be because people on such drugs still get fractures. I can’t have bisphosphonates nor AA… not that I would agree to take them. I looked at my diet very closely and eat more of certain foodstuffs.
Did you know about sacroplasty? As you rightly say, no one wants to know once one suffers SIF. It’s a real solitary battle. Take care.
Your story is dreadful - I don’t understand the rush to give everyone Denusomab or Prolia without telling the patient that they absolutely must go straight onto a relay drug as soon as they stop it - or even that there are consequences should they for any reason be late in having their next treatment. It is absolutely shocking. More so because some people are given it who cannot take bisphosphonates. What do these doctors expect their poor patients to do then?
Yes, I knew about sacroplasty. The idea is very good but I would worry in case any of the cement they injected ended up touching a nerve so I decided I’d rather leave things alone - the devil you know etc. I bought a magnetic mat that I lie on for 20 minutes twice a day and that made a huge difference to my pain. You’ve got to be able to get down to floor level to lie on it though.
I’ve got a few spinal problems that I’ve had for a very long time and back in the 1980s I had a steroid epidural - well I had two - for herniated discs and they worked up until now.
My physio wanted me to see a spinal consultant but I haven’t seen one. In the middle of all that I changed doctor’s surgeries, I did ask the new GP about a spinal consultant and she said she didn’t know of any - you should have heard the NHS physio when I told her that. I think the doctor thought I was asking her to refer me privately although even then I can’t believe she couldn’t recommend one - as the NHS physio said ‘the hospital is full of them’.
So, I didn’t follow that up because to be honest I don’t want anyone doing anything invasive and I feel I’m getting a reputation for refusing treatments - I stopped my bisphosphonates, I declined having my hand operated on for Dupuytrens, I refuse statins - tried them once years ago and within a week I could barely walk so never again - besides I think they can raise your blood sugar.
I also feel I’ve been very let down by doctors in the past - no one ever suggested that an overactive thyroid could lead to osteoporosis, or having RA, or being prescribed steroids or PPIs, I just feel that so many opportunities were missed if only someone had said I could have worked harder on weight bearing exercise and diet and the things you can do to help yourself. I may have ended up in exactly the same place but at least I wouldn’t have come to distrust doctors.
I’m glad your physio is starting again hopefully what you are doing now will help. I do three sessions a week of Pilates with a teacher who is a physiotherapist and she is always telling us we should never ever do anything that causes pain - even if it’s something we’ve done before and even if it’s something she is telling us to do. So you do not want to be doing anything that causes pain. Like you I find standing for any length of time unpleasant so I try to keep moving.
I think physios have all sorts of ways of adapting exercises that work on the same muscles. So she ought to be able to get you doing things that don’t cause pain.
I can see why your doctors say to keep moving - I think it’s about the only option but there are ways of saying it that don’t leave you without hope. I know that when my Pilates teacher has a break for a couple of weeks and I don’t keep up with my exercising I just fall to pieces and get more pain. I am my own worst enemy in that respect because I know now I absolutely have to exercise to be pain free and keep moving and I am perfectly capable of doing my exercises without my teacher being there.
Unfortunately for me everyone from the physio who referred me for the MRI scans that confirmed my SIF, my own Pilates teacher / physio and my rheumatologist who I booked when I still thought my pain could be a flare up - they are all strongly in favour of bisphosphonates- the rheumy wants me to have an infusion that way once it’s in I’m stuck with it unlike the weekly tablet where I just stopped. Actually the NHS physio I saw in the middle of it all ( believe it or not nine months after the A&E doctor prescribed a physio appointment for me for what he thought was sacroiliitis ) didn’t pressurise me about it when I said I’d stopped the bisphosphonates which was interesting but everyone else I’ve dealt with thinks I should take the alendronic acid ☹️
Like you I also suspect I’ve had the SIF for quite a while but I was never taken seriously by any of the doctors I saw. Mind you I’ve never been taken seriously before - in 2012 I was found to have Graves Disease. I knew I was ill yet one doctor looked at me as if I was some sort of nasty specimen she had found on a slide and told me ‘You’re needing your holiday’ - that was a few months before I almost killed myself in my car, I went to the doctor the following day because I knew it was more than needing a holiday that was wrong with me and by the end of that week I had been diagnosed and was being treated.
So I think I had a problem for a long time then last year I fell over backwards and landed on my tailbone. Well you know how agonising a sacral fracture is! At that point I was practically out buying a mobility scooter because I couldn’t imagine ever being mobile again.
Are you taking effective painkillers? My first private physio was adamant that I absolutely must have effective pain relief, that really helped then it all upset my gut and I moved on to paracetamol and now I use my magnetic mat.
Sorry, I’ve rambled on again but basically what I want to say is I hope your new physio exercises help you. The pain really is agonising.
Fruitandnutcase, thank you so very much for your most interesting post. I do feel for you. Like you I have experienced medical neglect on many occasions. It is appalling. Consequently one loses trust in doctors. I have met a few decent ones though. Not at the moment… It’s shocking that you were told you needed a holiday when in fact you KNEW there was something seriously wrong. You could have died in a car accident. Some doctors are still too arrogant, I am afraid. Will pm you later or at the weekend but need to do something now. Take care. Jocelyne
I know, I can laugh at that doctor now (we’ll sort of) she rocked back in her chair, put her pen to her lips, stared at me and said I was needing my holiday. I was almost crying with anger when I got back to the car to meet my husband - I remember saying to him ‘that doctor thinks I’m some sort of nutter’. We drove all the way to the south of France with me leaping out of my skin every time a car came near us and sucking on Dr Bach’s Rescue Remedy gummies to try and keep calm. My poor husband don’t think I was much of a holiday for him.
Fortunately I didn’t actually have an accident - it was a terribly near miss.
I was taking an elderly neighbour who was much fitter than I was to line dancing, we had to cross a very busy dual carriageway in the dark to get to the village where the classes were held, the visibility wasn’t good because of bushes in the central reservation , I looked and looked then just as I pulled out of the refuge to go a car came flying up out of nowhere - it was going very fast indeed.
We were ok but it was such a near miss that I got such a terrible shock - the adrenaline rush was quite something - next morning a Wednesday I saw the doctor, had bloods done next day and on the Friday afternoon I came home to find a message telling me I had a very overactive thyroid with antibodies, there was a prescription for me at reception, she had made an appointment for a consultant and to book for another blood test in four weeks time. You take care too.
I can’t help with the sacroplasty but wondered if you have a mobility centre near you? The one near me will help you with finding a walker and you can drive to the door so are able to check if you can fit and lift it into your car. Might be worth checking out. Good luck.
Many thanks for the suggestion. The problem is that my sacral fracture prevents me from lifting anything slightly heavy and my hands are too painful to open and close the Walker, it is even most difficult eating… Have tried this before but I cannot do it unfortunately. I appreciate your input though.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
THR bone infection 
Lumps on finger joints
Arthritis getting worse 
Swelling with RA and other symptoms, grateful for advice. 
Confused from the Preselis Hills
