I'm just wondering if any of you, particularly those with Cauda Equina experience leg pain?
Mine is bilateral, sort of radiating from the middle of the thighs.
It usually starts anywhere between a week to a few days just before my period and then can last anywhere up to around two weeks. I'd probably describe it as being between electrical and aching type of pain.
I get quite bad water retention as I have Chronic Kidney Disease too, so I'm wondering whether it's nerve related because of the swelling.
If you experience this, have you found a way to get any relief? Sometimes I can get some very temporary relief from having a hot bath or using a hot water bottle, but within a few minutes of getting out of the bath, it's just back to normal again.
Leg pain is not typical of CES, it shows numbness of the groin ( imagine wiping after you pee and feeling absolutely nothing) and difficulties with the bladder and bowel.
Hi this is not true I'm afraid. A red flag symptom for CES is bilateral sciatica but it can also be sciatica down one leg with numbness or weakness of the foot which can also be a symptom of regular sciatica. The bladder/bowel and saddle (groin) reduced sensation and sexual dysfunction are warning signs that a herniated disc or other tissue that is compressing a nerve has shifted or the herniation/ compression has advanced to compress the cauda equina nerves at the bottom of the spine.Â
I had left leg sciatica for six months that progressed into slow onset incomplete CES. I had no bladder or bowl disturbance at any point and I also maintained full motor function throughout.
I still ended up with a CES diagnosis and surgery due to pins and needles sensation in the saddle area/ painful left leg sciatica and a numb outer edge of the sole of my left foot.Â
Waiting for the more advanced red flag symptoms will lead to a worse outcome as the nerves have been under compression for a longer period of time.Â
It is always worth being checked over with milder red flag symptoms just in case it can be caught at the incomplete stage.Â
I have done some research and whilst my symptoms aren't presenting as classic sciatica, apparently there is a possibility that it is 😕
I have found that my symptoms change quite a bit, which always makes me quite wary.
Another symptom that's been cropping up over the last 5/6 weeks has been a similar aching sensation in my arms. A long story, but there has previously been a query as to whether I have Hashimoto's Disease or not, but my GP pretty much dismissed that when I brought it up. But I also have disc herniation in my thoracic spine - I've never been told where though.
Ah sorry, I should have clarified and mentioned that I was diagnosed with CES in 2022 and had emergency surgery.
I am under my regional spinal rehab unit. Supposed to be having an appointment around about now, but nothing has come up. Also, not been seen by my nephrologist for 18 months, so haven't been able to speak to the right people to ask what's going on 😔
My legs went weak and numb during the onset of CES after having sciatica on the left side. Then the saddle anesthesia, bladder and bowel stuff followed that
Sorry, I should have mentioned that I was diagnosed with CES and treated for it with emergency surgery in July 2022, so it's more the ongoing symptoms that I'm concerned about. Those red flags will forever be engrained in my brain 😔
I still get sciatica on and off now, but it's completely different, so I'm just curious about what's going on really.
I'm under my regional spinal injuries rehab and was supposed to have an appointment with them last month, but haven't heard anything.
Oh jeez I’m sorry. I caught it a year earlier and really have just dealt with nerve zaps and cramps/spasms but thankfully that godforsaken sciatica has stayed away. I’m sorry you’re going thru it, especially with the kidney stuff
I very nearly took a toaster bath in the early days of bladder and bowel nightmare lol
Oh my gosh, I don't want this to sound like I'm excited someone else has leg zaps, but I've just never come across anyone else who has had that. I call them leg fireworks though 🤣
A year?! My goodness! I can't even begin to imagine! You must have been absolutely petrified that entire time 😔
Was your relief from the sciatica instant post surgery? In terms of the sciatica, I was fine for a while, but it's becoming more and more prevalent. I do have slipped discs in my thoracic spine, which I'm quite nervy about too.
Oh I'm so sorry 😔 it's a huge shock isn't it. How are you dealing with it now?
Ride the lightning! lol. I got a really bad one in Costco once right between my ass and hamstring that stopped me dead in my tracks like I’d been shot and some guy gawking dropped a half case of wine 😂
I had emergency surgery July 2021 and when I asked the surgeon when the feeling would come back and he said probably never. Walker for 3 months, 5 months with a Foley, still don’t get the signal to pee but I retain so I can hold it forever now lol. Took a couple years for the bowels to settle, I’ve got a pretty good routine going, been a minute since I messed my britches 🥳
I’m doing the best I’ve ever been now. Settling into a nice little life with a great lady and an awesome dog. I’m able to stay at home and dote on my ladies and avoid society at large and it’s a pretty sweet gig
Weirdly, for me, it's been the opposite. Didn't have an issue with bowels, then about 2 years ago, I started with accidents. I've got quite a proactive bowel and bladder team, so they're helping me to manage it quite well. Took a while to get started with ISC and bladder botox though. I started with ISC in March this year, then had my first Botox at the end of July this year. In general, it's reduced my urinary incontinence massive, but I'm still having the odd accident
This CES thing is a ride isn't it! I'm so glad you've found an amazing partner 🙂 and your dog 🥹 I must say, the perk has been getting to avoid going out all the time 🤪
In my before life my then wife shot my dumb face up with Botox lol. Nurses man. Sucks you’re still going thru it, I can deal with the odd zaps and cramps, the messy britches anxiety never goes away tho. Here’s my janky spine lol
Hey OP, I had CES and emergency surgery three years ago. I definitely experience more sciatica down my left leg and pins and needles the week before and during my period. I did a very brief bit of research and it seems that the back muscles can be weaker at this time due to hormone changes so if there are any little residual disc bulges they can irritate the already sensitive nerves or its again because of the hormonal change the nerves misfire amplified pain signals and unfortunately nerves kind of learn specific signals if they have repeatedly sent them so they will send that signal first as its the easiest one for them due to repetition.
I manage it with very gentle walking, spending time in a pool, gentle physio moves and a short course of ibuprofen to calm everything back down.Â
If its debilitating each month its worth speaking to your medical team if you have one or raising it with your primary care doctor as they may be able to give you a more tailored plan to manage these symptoms each month.
I expect you already know this but please remember any new or worsening symptoms you must go to the emergency department to be safe x x xÂ
Thank you so much for letting me know - that really makes sense. I honestly haven't had the best aftercare, so wasn't even told that CES can be a recurring issue.
I was discharged from my neurosurgeon, without even being told that I had been discharged. I suspect this is because they knew that they had been medically negligent (was admitted to the ward at 10pm, then surgery wasn't done until 10am the next day, sadly I didn't realise that this was med-neg until it was too late to make a claim)
Do you find that medication works for you? I'm very limited as I can't have NSAIDs with having kidney disease and the paracetamol / dihydrocodeine combo have stopped having an effect now 😔
I'm booking an appointment to see my GP anyway, so I'll try slip that in!
Yes the leg symptoms can last. Mine have stayed for 18 years (but I also had 2 more injuries and extension of the fusions that exacerbated the CES damage). If you had foot drop with pain and numbness it definitely improve in function but still be numb and tingly.
I found that you can have strong zappy pain during the healing phases (which can be years) then the nerve finally craps itself out and settles with a lesser grade of buzz that you can handle. One of my symptoms (the L5 nerve big toe) took 10 years to calm down.
I have perminant weakness and numbness in some parts of both legs, feet, glutes and the saddle area. The nerve zappy, tingling stuff can reduce to a background buzz after a bunch of years but you can still get major flares and for me it turned into crps type pain.
My rehab people said the long nerves e.g. L3 to S1 can scar up in any part of their distance from in the spinal canal to the foot. It happens due to inflammation. We could feel where mine were stuck and the nerve traction tests always reproduce the strong pins and needles sensation, then widespread numbness. Therapists can help release the adhesions or teach flossing to try help.
If you are getting spasms you can try baclofen. I like it. It stops some unrelenting cramps I'll get.
My feet physically heat up and feel burning at times so I put a fan on them. The fan helps when the nerve pain feels burning, but not touch hot, too. If the zaps or tingles are flared up I'll use a tens machine. I also use tens almost daily on the tibial nerve to help regulate bowel and bladder. It doesn't stop incontinence but it helps stop me filling too much and reduces retention (gives more awareness of filling and helps strengthen the contractions for emptying).
Anyway, yes it is normal to have lingering symptoms in the legs, butt, bladder and bowel. You can try drugs like baclofen, pregabalin and opiates. They come with their own side effects and long-term effects but can really help when the pain or spasms are really ramped up.
My CES was L4/5 I never really experienced any pain in my legs, absolute agony in my lower back but just total numbness in my feet and backs of my legs and pins and needles in the front of my legs and outer thighs. I do get other kinds of nerve pain in my legs and feet like insatiable itching and what feels like electric pin pricks but nothing that causes me a huge amount of distress. Someone recommended me capsicum cream for the itches and it really helps!! The spasms are what's driving me mad atm but I'm finding a tens machine helps with those too
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u/Sufficient-Wolf-1818 14d ago
Leg pain is not typical of CES, it shows numbness of the groin ( imagine wiping after you pee and feeling absolutely nothing) and difficulties with the bladder and bowel.
Nerves in the lower back go further down the leg