Cauda equina and muscle spasms

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Hi guys just wanted to share my story with you all. Around 3 years ago I developed severe lower back pain that was the result of a manual lifting job I had at the time. Over a year the symptoms got worse and caused severe nerve pain in my right leg which my GP diagnosed as sciatica. I was at my gp most months asking for stronger pain meds as the pain was nearly unbearable. Around 2 years ago I remember it was a Friday and I made an emergency appointment to see my GP as the pain was so bad and I was struggling to walk more than a few meters at a time without stopping. At my appointment my GP didn’t examine me although I told him that I had a strange feeling in my testicles and they felt numb. He said he would give me stronger pain meds and refer me to the hospital to get a mri scan but the wait would be a few months. 

The next morning I awoke to find that my legs, feet, anus, penis and testicles were all numb. Not knowing much about medical conditions I tried to carry on as normal until I mentioned my symptoms to my brother who is a paramedic. He told me that my symptoms were very serious and that it sounded like QE. This was the first time I had heard of it. My parents picked me up and rushed me to the Hospital. Within an hour I had had an MRI scan and the doctor confirmed Qauda Equina syndrome. I was told that I would need emergency surgery there and then and was put into an ambulance and rushed to Cardiff hospital where the a surgeon was waiting to do the surgery. The surgery took 3 hours and I remember waking up very sore but the extreme nerve pain had gone. I stayed in hospital nearly 10 days as I was retaining urine so eventually left with catheters so that I could relieve myself. 

After leaving hospital I found myself walking with a limp which I worked hard to try and stop. I had no bowel problems but would self catheter 3 times a day to stop any UTI’s occurring. 

Other than the normally lower back pain the nerve pain had gone. 

It’s roughly two years now since my operation and I now have most of the feeling back in my saddle area and no longer need to use a catheter. I can also get a normal erection and ejaculate normally. My limp has gone although I still find myself limping when I’m tired as I have slight foot drop in my left foot. 

My biggest concerns at present are the muscle wastage in my left calf and foot. The instep of my left foot has gone very high and my foot looks withered?

I have also developed severe muscle cramps in both calf’s and feet especially at night? My feet and toes will contorted and the pain is unreal. I often have to dive out of bed. Has anyone else experienced this? I was just wondering if this is a normal symptom after cauda equina? And if there is any medication that could help? 

I forgot to say that I was 33 having the surgery and I’m now 35. I do feel very lucky as I know that there are a lot of people that don’t make such good recoveries. Any help or advice would be greatly appreciative

Thanks

Matt

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  • Posted

    Hi Matt,,. You certainly have had some bad luck. I get those muscle spasms in the calves. I get a kick out of Doctors who diagnose someone as having sciatica, because sciatica is a symptom of something else going on. I can't give any advice , because nothing really works for me. I do find some relief when the doctor gives me a Toradol shot; it seems to help ease some pain. I know the more I do the more my pain is though

    Dale

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    • Posted

      Thanks guys I’ve been thinking of going swimming to do some exercise. I was also told that amitriptyline could help with the muscle spasms? Have any of you tried this? 

      Thanks for your help guys I appreciate it

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    • Posted

      I take a charity of meds, I take Lyrica, tramadol, nortryptaline, etodolac for all my symptoms. It seems to help somewhat. I have pain 24/7.

      Dale

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  • Posted

    Hi Matthew, my story reflects yours to a tee except it’s from a female perspective and I am almost 5 years down the line from my initial emergency surgery. I was laying here at stupid o’clock trying to deal with my calf and foot cramps, twitches, muscle ‘ripples’ , spasms etc and decided to put my symptoms into a search engine and came across your input.

    I can tell you that while ever I was taking Oxycodone the leg muscle issues were much better to barely there. Docs argue that it can’t be the case but I’ve tried with and without and it was always the Oxy that made the difference even so far as if I was very late with a  dose the issues would start. I have had to stop taking it as I developed seratonin syndrome as a result of meds I was prescribed reacting together and as SS can be fatal obviously it was the lesser of the two evils. While I was still on the Oxy I had got down to 5mg twice a day and even at such a low dose it still practically eliminated the muscle issues. Now for me it’s not an option sadly, but maybe ask the doc if you can try it, the relief is incredible. Oh, this was a slow release drug in case there is another regular one if asked. Wish I could still take it! 

    Aside from from the above, the muscle wastage you mention would definitely be helped by hydrotherapy. I’m lucky enough to live in the south of the UK near Salisbury ( although some may say not so lucky at the mo with all this Novichock stuff going on haha!) and I am cared for by the Duchy of Cornwall Spinal unit and I attend Wessex Rehab where I am currently receiving both intensive Physio and hydrotherapy through the pain management team. Although it sounds like your foot drop isn’t as bad as mine, if necessary you can have a foot brace to help. The spinal unit organised a bespoke brace to be moulded to my foot and made in amazing material that closely matches my skin colour. No clue what neck of the woods you are from Matthew, but don’t forget you are entitled to the care of a specialist spinal unit as, as of about three years ago, Cauda Equina Syndrome has been recognised as a true spinal cord injury. I only attend once a year now for them to keep an eye on me as it were, but it wasn’t until I came under their care that I got the correct help and understanding of my condition. The first two years were hell! I was just kicked out of hospital and pretty much left to figure out these life changing symptoms ( I too have to use catheters etc) on my own. Important that your bladder function is monitored. I have videourodynamics carried out yearly at the spinal unit for this purpose, along with ultrasound of my kidneys and X-rays of my injury site, all just to make sure there is no more deterioration. 

    Sorry if I’m telling you what you already know re the latter, but so many of us don’t get the care or help we need as nobody tells you anything so I thought I would mention it. 

    I hope ive maybe been of some help.Good luck with it all.

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