Cauda Equina Symptoms

[rg11]

I am a 29 year old male. I've been in chronic pain for over 5 years. As each year passed I've steadily gotten worse, with no improvement.

The last few years I've had cauda equina symptoms. I have low back pain, buttocks, pelvis perineum hips pain. It radiates down both legs to feet. I have some foot drop in both feet, which I didn't have at the start. My spine curves slightly, mild scoliosis, with some osteoarthritis in spine. I had pain in bac k, legs at the start but could walk normally. I can barely stand upright as the pain in my lower back, legs increase and they can give way. I can't walk properly, abnormal gait, foot drop. The more I walk, the pain increases.

I have a constant urge to urinate but it takes long time for anything to come out, a strain, with a weak flow, stop/start. Bladder never empties fully and there is some incontinence after, which is embarrassing, especially at my age.

I had an mri scan in april of this year and it apparently ruled out cauda equina but did say mild right foranimal narrowing. I also had one in July 2019, by neurology which was normal. Would love an explanation as to why I've been experiencing all these symptoms. Hard to get seen especially with covid and wary of going to a&e and might still get same answers.

Sorry if Tmi, but not sure if cauda equina causes permanent erectile dysfunction in males or if they can still achieve some erections with it. I can still get erections, though not always as spontaneously as before. I wouldn't want to have permanent dysfunction before 30.

All this has really impacted my quality of life. I'm constantly confined to the house, can hardly stand, walk properly and have bladder control problems. Keep wondering whether something was missed. Waiting on blood test for fshd muscular dystrophy. Dont know if I have it or not but wouldn't explain the bladder problems.

[LisaKB]

Hi, I’m really sorry to hear what you are going through. I would advise going to hospital straight away with the cauda equina symptoms, this condition can come on suddenly and is a medical emergency. All the best

[rg11 in reply to LisaKB]

I had the mri scan before and it didn't show it. My doctors and specialists have all it I don't have it. Cautious about going to a&e again as the last time I was there 15 hours and with rise in covid cases

[cyberbarn]

I agree with Lisa, caudal equine is a medical emergency. you need to have the health care professionals decide if this is CE or not.

[Batty1]

If your not fully emptying your bladder this isn’t good and definitely needs to be dealt with. Do you have a herniated disc in lower back ?

[rg11 in reply to Batty1]

I know its difficult to cope with. Don't know what can be done. As far as I know I don't have a herniated disc in my lower back, from scans

[Batty1 in reply to rg11]

I feel for you and I hope you can get some help… keep pushing for the doctors help maybe see if you can see a urologist because seriously its not good to not fully empty ones bladder and certainly not normal….. I wince at the agitation this must give you not being able to go to bathroom I had a very similar event over 17yrs ago had to be catheterized for 2 weeks before it was discovered I had ovarian tumor turnt out to be cancer.

See a urologist asap

[KidneyCoach]

Cauda equina causes bowel incontinence and is considered an emergency. You haven't mentioned it so likely not CE.

[rg11 in reply to KidneyCoach]

I have some bouts of constipation, frequent stools, bits of it but not major bowel incontinence. Bowel problems too. Would love to know why these things are going on

[Emma2017]

Hi there, I had a massively herniated disc causing slow onset CE. As you said you do not have a herniated disc have they ruled out all other causes of CE? Like spinal stenosis or lesion or infection or any other possible cause? It can’t be acute CE as that is a very rapidly developing situation that needs dealing with within 24 to 48 hours. For me Ihad slowly deteriorating bladder and bowel function and ever increasing back pain and radiating leg pain. My surgeon recognised this and booked me for a rapid op. Anyway for you it first needs to be established if it is CE. If not you may have to keep pestering them for answers as clearly you cannot live like this. Good luck

[rg11 in reply to Emma2017]

As far as I know the mri ruled it out. Would herniated disc show up on xray or MRI? Xray showed mild scoliosis but told I don't need surgery. Symptoms sound similar to stenosis but was told it didn't show up. Keep wondering why and whether something was missed or if I wasn't lying on it properly. Don't want to have cauda equina but do want an explanation. If it was it or something similar I'd get more recognition, understanding and support

[Emma2017 in reply to rg11]

Hi an herniated disc does not show up on an X-ray but does show up on a MRI. I also heard of a guy who had terrible problems but every MRI showed up fine. He pushed for a sitting/standing MRI. They would not give one. In the end he paid for one of those and it showed a massive herniation. This is quite unusual for it not show on a lay down one but thought I would mention it. Maybe they should explore the other possible causes first?

[rg11 in reply to Emma2017]

That would be strange if different results between lying and sitting. Could ask about it but probably say no

[Emma2017 in reply to rg11]

Oh they more than likely will say no. It is rare but this guy was convinced there was something wrong. His consultant actually complimented him on his perseverance. Just hope you will find an answer. As I said there are other reasons than herniated discs, it’s just they are rarer.

[Lambeth87]

Hi l am in the same boat l have been fighting my doctors to recognise that l have slow onset Caudill equine syndrome which is very difficult to diognoise most doctors dismiss it keep on fighting