cauda Equina

[Caza]

Does anyone know if cauda equina can happen twice?

19 years ago I had a nasty accident & ended up with CE. I lost all feeling in my left leg & also lost control of my bladder & bowls. I had a fantastic surgeon who got me back walking etc,,, the man is my hero. I was left with pain but I learnt to live with it. Fast forward to a few weeks ago all the symptoms are back. They’re not as severe but they’re definitely back. The pain has gone up a few notches. I’m absolutely terrified. Can anyone tell me if you have it twice? Has this happened to anyone else out there? I haven’t done anything about it yet I’m just hoping it all goes away. Burying my head. Help I’m scared

[bantam12]

If you look online it says you can get it more than once and you need to seek urgent medical help if symptoms return.

[Caza in reply to bantam12]

thank you. I did look online but all I kept coming up with is legal advice for when ces hasn’t been picked up by the hospital. Which wasn’t so in my case. Not great at looking up things to be fair.

[Bevvy]

Yes it can return more than once and you need to be looked at by medics I’m afraid. With us now in a long bank holiday I think you should go to A&E. I know is last place you want to be but you know how serious CES can be. Also it might be they can rule it out depending on what tests they do.

Likewise you should contact gp on Tuesday and explain what is happening. If no MRI at A&E the gp can refer you urgently for one.

[Caza]

thank you. I will phone my gp on Tuesday & hopefully get an appointment on the day 🤞. I’m taking it easy today. No problems with my bladder since yesterday morning. I am in pain but it’s bearable. I keep hoping that it’s just inflamed & will sort itself out. Now you guys have confirmed my fears of ces returning I can’t bury my head anymore Just wish I wasn’t so frightened but I am.

[MSTKing]

hello, I think with the symptoms you’ve mentioned it would be wise to attend A&E. I know it must be scary but it’s best it is checked out. Due to the damage it can cause I would treat it as an urgency.

Good luck.

[Caza in reply to MSTKing]

thank you for replying. I did very little yesterday in the hope that it’s just inflamed. The pain is a lot easier, no more accidents. See how I go this morning. I guess I’m so scared because if it has happened again I know what’s ahead.

[MSTKing]

As someone with spinal cord injuries- I know just how difficult it can be. Even if you think things have eased off it may be a good idea to get in touch with 111 and get their advice. Hope things continue to get better and ease your worries.

[Caza in reply to MSTKing]

I know your right, just need to get my head round it.

I’m sorry for your injuries

[MSTKing]

Take care, rooting for you.

[Tenderlovingcare]

Hi , yes it can happen twice as it happened to me in 2015 and then again in 2016 then I was left in a wheelchair with limited control of my bladder... luckily I had an amazing surgeon who did major spinal surgery on me in February 2020 where I've had most my spine replaced with meatl , Knuts and bolts and a deceive called a Wallis ligerment placed ... I had never heard of cauda equina before it happened to me ... I live in pain but its managed with medication... if you have any other questions or want any advice your more than welcome to ask xx

[Caza in reply to Tenderlovingcare]

thanks for your reply. My sons spine is all nuts & bolts. Ex rugby player. He still gets a lot of pain & cant bend down It was never cauda equina but equally as well bad.

Yes similar here, I couldn’t walk & they said I’d leave in a wheelchair but I was so lucky to have the top surgeon on duty that night. I managed to walk out of the hospital, well almost.

[Mitch48]

Hi there,

I’m sorry to hear that you are in pain but please do not leave anything to chance! I had Impending Cauda Equina when the symptoms or at least some of them come on slowly (a few bladder ones) then very quickly I began to have other symptoms such as pain & numbness, etc. I had a private virtual consultation with my neurosurgeon (in 2021) who had my MRI scans taken only a few days before and I was very quickly admitted for emergency surgery.

I now have more mobility problems than before and other symptoms unfortunately but it could have been much worse.

If you believe that you have symptoms again of CES then PLEASE go and get some medical advice, do NOT leave it. We are all lay people on here but some of us have experienced this rare but often life changing condition and truly know how severe it can be.

If it is not CES then at least you have played safe.

Good luck

Kind regards

Mitch.

[Caza in reply to Mitch48]

thanks for replying. I know that you are all right. I don’t really know why I’m not taking myself off to A&E. At least if they do a scan I’ll know one way or another but will they scan me on a Bank holiday weekend 🤷‍♀️. I doubt it. If I stay as I am I’ll contact my GP on Tuesday if things get worse I’ll go to A&E. atm I’m feeling really sick is it nerves or because I can’t go to the loo. I don’t know. I am taking it easy.

[npen]

Hi, have you contacted your doctor yet? If not then really must because just leaving this can cause real problems. I know it's scary but please get it looked at.

Kind Regards

Nicola.

[Caza in reply to npen]

On my way now.

Thanks for replying. I’ll let you know how I get on

[Caza in reply to npen]

on my way to A&E with possible ces or sciatica

[Rachmaninov2 in reply to Caza]

Good luck Caza, I hope everything goes well. Thinking of you. 🌷

[npen]

Good luck at the hospital. Let us know how you get on. Take care.

[air4ce]

Carza, I am with cauda equina syndrome since 2009; the problem is permanent for myself. Yes, you can get it again. Because of this cauda equina, bowel, bladder, paralyzation tothe toes on both feet have been ongoing. Do not mess around with this situation. Go back to the neurosurgeon or whoever you are using for evaluation. Below is some information that you might seem to be helpful:

What are the types of cauda equina syndrome?

There are two types and two classifications of cauda equina syndrome. The syndrome is acute or chronic, and it’s either complete or incomplete.

Types of cauda equina syndrome

Acute cauda equina syndrome

Severe symptoms start suddenly. You’ll likely need surgery within 24 to 48 hours.

Chronic cauda equina syndrome

This name means long-lasting cauda equina syndrome. It describes two scenarios:

If you’ve had symptoms of cauda equina syndrome for a period of time before you see a healthcare provider, it’s labeled chronic.

If the surgery doesn’t fix your nerves and there is permanent damage, you’ll likely have symptoms for the remainder of your life. Your healthcare provider calls these symptoms chronic.

Emergency surgery might stop permanent damage. See your healthcare provider if you have symptoms.

Classifications of cauda equina syndrome

Complete cauda equina syndrome

Complete cauda equina syndrome causes urinary and/or bowel retention or incontinence. Retention means that you’re unable to pee or poop, and incontinence means that you can’t stop yourself from peeing or pooping. It affects about 60% of people with cauda equina syndrome.

Incomplete cauda equina syndrome

This affects the other 40% of people with cauda equina syndrome. Typical symptoms include loss of urgency or increased urgency sensation in the bladder and bowels without retention or incontinence. This means you can’t feel that you have to poop or pee, or you feel the sensation stronger than before.

How rare is cauda equina syndrome?

Experts estimate the cauda equina syndrome affects around 1 in 65,000 people. It affects males as equally as females.

Prayers,

Mike

[Caza]

Thank you so much to everyone that replied. 8 hrs in A&E it isn’t cauda equina. It’s inflammation & swelling in the area where I had the op. The inflammation has caused all the symptoms. Probably over done the exercise. They were very good in there & thorough. Very happy with that 😊

[Rachmaninov2 in reply to Caza]

That’s great news, thanks for letting us know. 👍

[Caza in reply to Rachmaninov2]

it was such a relief I can tell you.

[Rachmaninov2 in reply to Caza]

I can imagine. Good for you that you were able to overcome your fear and go to A and E. I hope things improve soon. 😊

[Caza in reply to Rachmaninov2]

they have recommended to my gp that I’m put on Gabapentin, do you know this drug?

[Rachmaninov2 in reply to Caza]

I’ve heard of it. It may be worth posting the question.

[Mummymoi]

Hi. I take Gabapentin twice a day for nerve pain caused by Fibromyalgia and Chronic Pain Syndrome. The CPS causes tingling and numbness right down my left leg from hip to toe and pain which can vary from mild to excruciating for no noticeable reason. Gabapentin definitely helps with the pain but it does have side effects which can affect some and not others. On the whole I'd rather take them than not. You can Google it and check on the side effects but need to try yourself to know how they affect you. Hope they help.

[Caza in reply to Mummymoi]

Thanks for replying. The other night I woke up to what I can only describe as having red hot needles being stabbed into my foot. Just the left foot, never had that before. Not pleasant & kept me awake.

I was so pleased on being told that it wasn’t CES that I didn’t ask what happens now 🤦‍♀️ so I’m left with all these symptoms & I’m not sure what I’m meant to be doing. Still taking it easy & the pain is easing up but the bowel bladder & weird sensation in my leg & foot are still very a problem. 🤷‍♀️

[Mummymoi]

As I said I still have the numbness and pain in my leg but those sharp needle-like pins are not as severe or as frequent since taking Gabapentin. We're all different but I would certainly recommend that you give them an try. Hope they help. X