I had spinal fractures in lumber region, thoracic and 2 in my neck five years ago. Pain became really bad over last 6 months, shooting, burning, aching, numb toes, shin pain, thigh & groin pain. Couldn’t turn at night, could barely walk across to shop or reach lower shelves, the ache would also build and build when standing still in a queue. Sometimes I could walk perfectly though! Options were, injection, do nothing or spinal decompression with complications listed and including heart attack, stroke, bleed to death, blindness and more. Obviously they are rare but put so bluntly very scary.
My question is: Is it worth the risk? Pain and mobility issues have eased recently and I don’t know if this is a brief and temporary improvement as I’ve changed medication. Has the op worked long term for anyone or perhaps made things worse.
I feel pressured to decide because if I don’t have the op I will have to start the whole process again via a GP to get on a waiting list for consultant/surgeon and I’m in my 70’s now. I can live with this with the recent improvement but have no way of knowing if it will last. I’m in the UK.
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Everyone is different . I had Caude Equina 11 years ago & had to have a decompression, laminectomy & fusion , for the first two years I could barely walk . The pain has never totally gone away , I did manage to get down to Oramorph & paracetamol twice a day but this winter since I had an epidural my pain has returned with a vengeance. Besides the burning & shooting pains , I am now getting weakness in the front of my legs & am back on Buphrenorphine patches . I would think long & hard & discuss it in depth with as many health care providers as you can . I personally don't know of anyone who has had an operation & is pain free. I wish you all the best in whatever you decide xx
It is a difficult one. I am the same as Hzhr7 in that I developed Cauda Equina almost a year and a half ago and had to have emergency surgery. I now have Cauda Equina syndrome (CES) in that I have ongoing issues. At my last surgical appointment I was offered a choice in further treatment. 1. Do nothing and continue with painkillers 2. Have a spinal injection- no idea how long will last and 3. More surgery which has an inherent risk due to scar tissue from my first operation. Many of my issues would not be helped through another operation or spinal injection. If it would help I would be jumping up and down saying when can you operate!!
Therefore I have decided (at the moment) I have decided to do nothing but keep taking pain medication- which do help. If I was in severe pain I would think differently am sure. For me the risk is too high. I already have paralysis in my toes and I think it’s just not worth the risk.
I did think long and carefully about it. Discussed with family and friends and finally spoke to my rehab consultant who agreed with my current decision.
I would say don’t be rushed to make a decision and if you need more time to think about then take the time.
Thank you. I’m so sorry to learn of your predicament which sounds horrendous. I was on gabapentin for 5 years and they were no longer helping and things had become progressively worse over 6 months to the point of intolerable. I recently got a months prescription for pregabalin and after 3 days I started to improve. They say it takes 2 weeks to kick in so maybe this is a coincidence. It’s so hard to know. Surgery scares me in case it makes things worse or I get one of the lengthy list of potential complications. Blindness , stroke and bleed to death are quite scary reading. Surgeons certainly tell it as it is! I’ve read that pregabalin isn’t meant to be long term, but maybe it is for some people. I think that I’m slowly ebbing away from surgery but then the worst pains could return with a vengeance. The mri didn’t look great. Reading other people’s situations on here is very informative but also really heartbreaking to realise how badly some people are suffering. Love and thoughts to all.
I had a spinal decompression on L5 and S1 in 2018 when I was 67. I still do not have to the severe pain in my legs I had prior to surgery. My back pain remains an issue. Between 2020 and 2022 I had multiple spinal injections, nerve root blocks and two caudal epidurals. I suspect that my PMR was triggered by all these invasions. The effects ranged from nought to three months. I was so determined to try anything but now realise that for me it is no longer worth taking the risks involved in every procedure. If you do decide to go ahead with surgery, give a lot of thought to how you will cope when you are discharged. I was in hospital for two nights. As you are getting some improvement now, I would be inclined to increase any specific exercises you may have been given, keep as mobile as you possibly can and avoid surgery at least for the time being. I swear by the website backintelligence.com. Good luck in going forward in whatever you decide.
Good morning I'm really very sorry that you're in this predicament.
I had my first spinal surgery at age 17, I was told that if I didn't have it then I wouldn't live past my mid 20's (think that was an exaggeration now).
Unfortunately, I had to have a further 7 major spinal fusions in my 30's, my whole spine & neck is fused, ribs removed, vertebrae removed et al.
My advice is that you need to think long & hard about the surgery (I don't mean to sound patronising about it!)
I'm 54 now & I'm in a wheelchair ♿️, which is not what was supposed to happen! I'm in absolute agony 27/7, on many different opiates & other meds (12 different meds each month).
I know that I'm probably not really selling the surgery to you, but it's just that if I had the choice again I would definitely not have the surgeries.
But, I know a few people who spinal surgeries have been successful.
My story, isn't the best but I just think if you can manage the pain then maybe go see the consultant again and see what their opinion is.
If you have the surgeries then I wish you well and I hope that it improves your quality of life.
I'm sat here thinking about deleting my reply to you..
...
I have on Pregabalin for 17 years (I mention this as you mentioned that it's just short-term)
I'm going to post my reply.
I really hope that things work out well for you 🙏🏻
It is the kindness of people like yourself who help me to reply/advice people on here.
I have just seen in your bio that you have scoliosis, I totally understand what you have to go through every day.
I hope that you're able to continue playing tennis 🎾 & to enjoy it 😊.
I wish you well & onwards and upwards. I know that it's really difficult some days but you find the strength to get through the hard days (sometimes there's tears & tantrums)
Best wishes and thank you again for your kind words (it's made my day 😊) xx
So sorry for how much you have suffered and wishing you every happiness possible for the future. Your courage is amazing. Thank you for your advice which is so honest and therefore very helpful. x
Like so many others here, I had surgery for Cauda Equina Syndrome (for such a “rare” illness there sure does seem to be a lot of us with it!) so not quite the same as what you have, but my surgery was life-changing. I knew while still even in the Recovery Room that my pain wasn’t as bad, the electric shock feeling was gone and while I still have leg numbness and need crutches for balance plus still incontinent, that was more that I had CES for 3yrs when it’s supposed to be a medical emergency and should be treated ASAP.
I went on to have major cervical stenosis surgeries 4yrs ago, and like you got the worse-case scenarios of bleeding, stroke, heart attack or death and didn’t really give them much thought as if I did nothing then I was looking at paralysis from neck down. Again I wasn’t given much time to consider, from diagnosis to surgery was less than a month. The closer you have surgery to the brain, the higher the chance of these side-effects, but since my neck surgeries I’ve became aware of others who had similar surgeries also in their 40s and did have a stroke or heart attack in theatre. Made me realise how lucky I’ve been as while I’ve still got pain and some degree of arm/hand paralysis , I could’ve been so much worse off.
There is a FB page for people in the UK with spinal stenosis I joined and you’d get lots of advice there as people of all ages and some like me who’ve had surgery, others unsure, and some who’ve chosen to not get surgery but like the support. Almost all of us have either had Gabapentin or Pregablin and again various successes, I’ve been on it for 10yrs and really helps my nerve pain but other folk do better on other medications.
If you choose surgery must you go with a surgeon assigned to you or do you have a say in it? It's a tough decision for sure. My 5 plus years of severe and chronic pelvic pain appears to be coming from my lumbar spine. I've had almost every injection, drug, and physical therapy imaginable with no success except for a recent L3 L4 injection.If I were able to live with the relief medicine is providing I might stick with that if I were in your shoes or prolong making the decision Has any doctor mentioned a spinal cord stimulator as an alternative?
Hi there. Difficult question to answer. I had CE too and ended up with 3 microdiscectomies and then a fusion of the l5/s1 disc. I had various spinal injections which never really helped and 2 denervations which did help for a while with the nerve pain. The fusion for me was a huge success and I was glad I had it. I also had a decompression of the L2 not quite as big a success for me. As you are older there is always more risks with any operation. There is no guarantee your pain will disappear completely so as others have said do not rush into it but way up the pros and cons. If you do go ahead go with a really good surgeon as that would make a lot of difference.
Thank you, it’s good to hear that your fusion was of benefit. I wish it was possible to research surgeons and choose one but it’s a case of going with the one you are referred to. The one I am with seems very experienced and has excellent reviews but I am feeling less and less keen on surgery if I can just maintain the improvement I’ve had very recently. I find this site and the responses I’ve had incredibly helpful.
I feel if you have things more under control now and it is manageable I think you might be wise to not go for the op. If for some reason it gets worse again you can always re evaluate then. Spinal operations are not light and do take some time to get over. Hope you keep on feeling better. Good luck.
We are all different it’s one of those things that if you don’t have it will you be wondering but I’ll tell you my story I had 2 operations a spinal decompression that sort of gave me a little of pain free period and then returned 10 fold so I had to get a spinal fusion that’s left me in constant pain for the last 12 years that got me so low I went to commit suicide and had to get counselling I still have low periods but I get through the day.
Hi there, I do understand what you are going through as those who have replied obviously do so also. I had a decompression, laminectomy and fusion L5,4,S1 and I thought long and hard about it. I had other problems with spine and it was becoming increasing unstable. I went the route of injections at first, as I was told by the consultant they were not able to operate until I was 60. At one point in the early days I thought surgery was not for me, I did not have a cauda equina but was at high risk of one. I had to have a hip replacement as my spine wore my hip joint away, which kept me going for a year. However, the pain was ever increasing and my legs would feel dead and I really could not walk very far, even around the house, things got so bad that I decided to go for it. I am really glad that I did because although I still have pain, it is manageable, and I feel I have got my life back, I don't know what I would be like now if I hadn't gone through with it. It is certainly a big op with many risks and not many surgeons would operate on me as I had some added risks but a very good neuro surgeon was willing to do it. It is not a magic wand and it took about two hand a half years before I felt the full benefit of it. I was perhaps one of the lucky ones as I know others have not been so lucky, but at the end of the day I had got to the point where life was extremely difficult and painful and I felt that I hopefully had more to gain than to lose. It is indeed a huge decision and only you can make it, weighing up the pros and cons for you and your situation. Wishing you very good luck in whatever you decide to do.
Thank you very much. It is so helpful reading other people’s experiences and yours is so honest and I’m very glad that you found it beneficial. Replies have helped enormously in weighing up the pros and cons of the good outcomes and the not so good. Once again, Thankyou and I wish you every happiness with your improved mobility.
I had a hemi laminectomy for lumbar stenosis about 18 month s ago as the pain was unrelenting. I was 78 at the time and felt that I would rather risk the possible complications than spend the rest of my days in pain. The doctors have to give you all the possible complications due to the fact that we live in a litigious society. In my case the surgery was successful with no complications . I think you have to decide how much pain you are in and whether it can be controlled with analgesics. Also bear in mind that long term usage of some of these drugs will have side effects as well. In the end it is up to you to weigh up the pros and cons . However I would add that if you read the inserts in the packets of the drugs you are using you would probably never take any of them!
Ii wish you good luck and I hope you manage to get a pain free life.
Thankyou. Your experience is very reassuring. At the moment my pain has reduced to the level I can live with whereas a couple of weeks ago it was quite extreme and I could only walk a very short distance plus my leg kept giving way when I least expected it. I have no way of knowing how long the improvement will last or if I can avoid complete discharge to hold off a few months to see if it reverts to being unbearable. I’m meant to have reached a decision on the 23rd !
i think that one is now able to choose which surgeon operates on you. If you do have a choice I would always recommend a neuro surgeon instead of an orthopaedic. My wife was a physio and she always used to advise patient to do that.
I had an L5/S1 microdiscectomy in 2008 after a very bad slipped disc that left me on the floor for 2 months. When I woke up the pain was already much better, and I was so relieved! ~6 weeks later a different pain started, along with sciatica, numbness, pins and needles, and muscle spasms. It hasn't stopped for 17 years. The bad outcomes aren't common, but somebody has to have them. Hi. I'd wait if you can.
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