Cauda equina syndrome - anyone had surgery?

[TheExMotherInLaw]

I have a herniated disc low in my spine, which causes pain and a few other unpleasant symptoms. I have been told that they won't operate until it gets much worse, as the risks of surgery are quite high - I could be left paralysed, with no control below the waist. It's slowly getting worse, especially with added spinal stenosis thrown in the mix. Has anyone else on here had that surgery, and if so, how bad did it get before you had it done? Also, how much better are you now?

It sounds as if you have have been receiving a few mixed messages possibly? CES is a medical emergency which can cause loss of bowel and bladder function and even difficulty walking. This is caused usually by nerve damage from the herniated disc or other trauma.

Discectomy surgery would always be offered if someone has proven CES. It can also be done to relieve sciatic pain from the disc if other treatments have failed and it persists. Many discs will resolve over time without surgery. Surgery for discs causing leg pain is far more successful than for back pain.

Spinal stenosis is another whole ballgame and, I believe surgery is much more invasive and carries other risks.

I did have a discectomy and suffered a lot of complications from which I will not recover. I know others in similar situations. I also know several people who have had discectomy and done very well. So much depends on the candidate, the surgeon and also to some degree, on luck. I was cited various low risks before both my spinal surgeries and paralysis was not amongst them.

Good luck.

Thanks - after initial injury things eased a fair bit, and am now going downhill, and have a few of the warning signs of CES that I was told to look out for, but I can still walk, and am still continent. I know the stenosis is another ballgame, just happens to be played on the same park. I've been in pain for so long, I don't know what level of pain is acceptable any more.
When my GP got the writeup after the MRI, she called me on my mobile to see if I could get to her immediately, then phoned the hospital to speak with a specialist, who was surprised I was on my own 2 feet and continent. Getting a phonecall from your GP is enough to scare the ...

I suggest you ask for an appointment with a neurosurgeon or spinal surgeon to discuss, it sounds as if so far this has all been via your GP? The surgeons will discuss risks and benefits way more knowledgeably and accurately than most GPS. That is not to knock the GP, it's just not their area of expertise.

I was in exactly the same situation as you. I had a herniated disc after a fall in early 2010. The symptoms of leg pain, numbness, pins and needles and buttock pain gradually got worse and worse so my GP referred me to my hospital for physio. The extended scope physiotherapist was excellent and very thorough. She could see I was experiencing loss of reflexes in my ankle and also some saddle numbness so arranged an MRI scan. The day later she called me as the MRI had shown up 'red flags'. She urged me to try and see a consultant privately as she was extremely concerned by the MRI results. It showed almost complete spinal stenosis, severe squashing of the sciatic nerves on both sides although I was only really having problems on the left.

Luckily I had private health insurance with work so I was able to secure a private appointment with the NHS surgeon that carries out the surgeries the same week. After reviewing the MRI results he was also amazed I was walking, continent and still in work. He explained that it was very urgent that I should be looked at and that he was concerned I could be in grave difficulty if I ignored it.

This was on a Thursday afternoon, he picked up the phone to his secretary and arranged for me to go into hospital on the Monday for surgery on the NHS on the Tuesday.

The surgery went well and I would say took about 3 months to fully recover from. I am still left with numbness in my thigh, calf and foot but largely the pain went away. He was very pleased with me post surgery and told me to go away and enjoy my life!

I've mostly been great since - the odd flare up that I would take diclofenac for and it would settle. I would say that it has started to flare up again more often lately so I don't know if things have started to herniate again but it's not got so bad that I need to go back to the GP....yet...

Please ask if you have any specific questions about the discectomy surgery.

Thank you. I saw an orthopaedic surgeon almost 2 years ago, who said to carry on as long as I could, no lifting, carrying, repeated bending, and to go in immediately if I became incontinent , in extreme pain or numb. he said he wouldn't operate unless I was almost as bad as the worst case scenario if the surgery went wrong. That same week my dh had been told he needed urgent cardiac surgery - main artery to the heart 95% blocked, so likely to drop dead if he carried on running, cycling sailing, as he had done for decades. He's fine now, thankfully! Anyway, I've had 2 years of it not being too bad - coupled with ME, I can't overdo things anyway.! It's interesting that diclofenac helps settle a flare - I'll go back to my GP and ask for stronger anti-inflammatories (sp)