Hi guys, wondering if there was anyone out there who has has this procedure ?
Following my sacral fracture, I have been left with severe chronic pain which the consultant and pain clinic doctor both think is chronic and permanent. However the orthopaedic surgeon who diagnosed the fracture initially also thinks that fusing my sacroiliac joint will help reduce the pain maybe 5/10%?
I'm terrified that my pain will get worse afterwards, I honestly don't think I could live with any further pain but at the same time, I'm desperate for anything that will reduce my pain!
Is there anyone out there who has had this surgery who can tell me how it went?
Thanks 😊
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Toplady
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I do not have this exact injury, so cant offer advice to you but I will keep you in my thoughts and prayers. Hope you find the answers you are looking for.
I haven't had the surgery yet but I am seeing a surgeon on the 1st April to discuss it. I first saw him last year so it's taken a long time for him to go through all the tests and agree to the operation. Unfortunately he is nearly 200 miles away but he is the only one in Scotland who does the minimally invasive surgery.
I'm very interested that you are being offered the surgery if they hope for such little improvement. I've been told it's four months on crutches afterwards so I'd hope for a bit more for all that pain and disability.
I have about a 40 % reduction in pain from steroid injections even though it only last a few weeks. I've been told to expect that effect, but with luck permanently , from the operation.
What part of the country are you and what hospital will be doing the operation if you don't mind me asking ?
No, I don't mind at all! I'm in Merthyr Tydfil, South Wales and I would be having the op on Llandough Hospital in Cardiff. I'm due to have a CT Scan before the surgery to see the condition of my bones (I've also been diagnosed with severe osteoporosis) and then we'll meet to discuss it further. The surgeon is very well regarded and keeps telling me that he has to try this as he hates seeing me in such pain. I'm at the point where I'm desperate for any long-term relief, I've had 2 rounds of steroid injections with very little effect.
I've lost my career, my job and may lose my house due to this continuing awful pain so am ready to grasp at any straws that come my way but am truly terrified that it could get worse. It's such a difficult decision to make 😯
Top Lady, I have no knowledge on this subject, but my immediate thoughts were vitamin deficiencies, especially vitamin D. I have no idea if this will help or not, but good to rule out either low in range or Deficient vitamin D bloods, maybe ?
Also B12 deficiency can lead to spinal problems.
Vitamin D3 helped stop my joint pains and my tailbone pain (ccoyx) and lower back pain straight away. c
Coccyx or tailbone, I believe is very close to the sacroiliac joint and the spine nearby.
(I was never good at maps )
* Also B12 Deficiency can lead to spinal problems.
*Try googling sacroiliac joint and vitamin D deficiency together.
85% of us here in UK are either low or vitamin D deficient and do not know it. I did not realize I was deficient in vitamin D. Vitamin D is the sunshine vitamin, many say their bones and joints hurt less in summer.
Also my Doctor said there was no cure for my tailbone pain, but I managed to cure it with a high safe dose of D3.
Just my thoughts only Top Lady, but worth Googling to check it out.
Is this National Health ? I'm having a procedure called SI Bone fusion whcih is minimally invasive and involves inserting titanium rods to stabilise the joint. He will only do one at a time. I think that might be a just in case precaution.
I've got arthritis in both SI joints and my hips. The pain is pretty u bearable at times . Heavy duty opiates and very very little exercise. I can only walk for about 3/4 minutes without the pain becoming much worse. Sitting is hard.
Trying to get to the hospital for the consultation is difficult and expensive ( lots of taxis and first class rail travel) . I don't like to think how I'll manage after the operation.
Looks like you will have yours before me so I can be forewarned. Though maybe it's a different procedure.
Yes Dec, this is NHS and sounds exactly like my surgery. Sounds like you & me have very similar symptoms, life is hard isn't it? I'm lucky as I have a wonderful partner who takes me to all my consultations, surgeon said the op would be done probably within a couple of months but need CT Scan first.
I was wanting to know if you got your operation and if it has helped with your pain? I was considered for SI joint fusion because of a sacral fracture but then I was told that I was told they are not going to do the operation and that it wasn't the answer for me. I'm still in a lot of pain with hands & feet burning pulsing prickling with pain. I'm only 38 and don't want to be left like this managing pain .. it would be great to know how you got on?
The simple answer to your question is no, I haven't had the surgery! I haven't seen my consultant for over a year but after researching and talking to people, I've decided against having the surgery anyway. Both my pain clinic consultant and my rheumatologist (who treats the Osteoporosis which caused my spontaneous fracture) have been very vocal with their thoughts on the surgery and whilst have not advised me against it, have both said that they wouldn't have it if it were their choice. They both said that the pain in my case, was now permanent and doing surgery on my SI joint wouldn't solve it and could make it worse. I took the opinion that I couldn't stand the idea that it could get worse; at the moment, I'm managing ok-ish, I've been given all kinds of new medications by the pain clinic, I'm using all the pacing techniques taught by the pain clinic, I'm using my wheelchair as much as possible to avoid any unnecessary movements and I'm 'accepting' my so called 'new life'.
I'm not saying any of this is easy, I've lost my career, the majority of my friends and have just turned 50 knowing that this bloody pain will be with me forever. I just cannot take the chance that the pain could increase, that terrifies me, I remember all too well the pain levels before I started seeing the pain clinic, I would be suicidal if it went back to that kind of pain so have decided to leave the surgery for now.
I have been incredibly lucky that in the last year, the consultants have backed my application for ill health retirement so I've had that approved. The knowledge that I'll now have a regular, if small, income helps me stop worrying a bit and helps me when it all gets a bit too much.
I really hope that someone helps you manage the pain, if someone had told me three years ago that I'd be in this situation, I would never have believed them but yet here I am. Us 'young 'uns' need to find support wherever we can find it.
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