Symptoms of Cauda Equina Syndrome but no firm diagnosis?

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Hi everyone

I am currently in a frustrating, not to mention worrying situation with regard to my condition at present. This seems like a really helpful community so I'm glad that I have stumbled across it. To get the full story across, this post will no doubt be a tad lengthy, but I will try and keep it as brief as possible! If you don’t have time to read the whole thing just skip to the last few paragraphs which explain my current situation.

To give some background, I have suffered with lower back pain and sciatica on an intermittent basis since the age of about 16 (I am now 32). These episodes would eventually subside with a combination of remaining active and taking OTC painkillers. 

Towards the end of 2013 I had a particularly stubborn bout of sciatica, though I did not bother consulting my GP until mid-January 2014 when I got up out of bed in the morning and experienced the horrendous pain associated with a herniated disc. I was prescribed Tramadol, Naproxen and a short course of Diazepam. A few days later I had some trouble emptying my bladder fully and experienced some straining and hesitancy. I called my GP who arranged for me to be assessed for CES straight away by a colleague of hers. Other than the pain and urinary problems, I did not have any other symptoms such as numbness. It was deemed that the Tramadol was responsible for the bladder dysfunction, and that was that. 

After a few months of physio my symptoms did not improve, therefore I had an MRI scan in April 2014 which revealed a disc herniation and nerve compression at the L4 / L5 level. I received decompression surgery at the beginning of May with a private neurosurgeon. This operation initially brought significant relief, however after a few weeks I began to experience some twinges and, at that time, mild pain radiating down my left leg (prior to the surgery my right leg was predominantly affected). This pain gradually worsened over the course of a year, and after several unfruitful GP appointments, I finally managed to get an MRI scan which revealed a further herniation at the same level plus some stenosis. I eventually received a laminectomy at the beginning of 2016, though the disc was not operated upon at that time. Prior to this particular surgery, I developed mild urinary incontinence in the form of dribbling after urinating. I visited A&E however I did not have an MRI scan, and the Amitriptyline I was taking at the time was deemed the culprit. I discontinued the Amitriptyline there and then, but the urinary symptoms remained. They were completely resolved following the laminectomy however.  

During the months following this surgery I suffered with repeated lower UTI’s, one of which developed into a nasty kidney infection. In October 2016 while I was about a mile into a dog walk, I suddenly – I mean literally out of no-where – became incontinent. It wasn’t a huge amount, but enough to notice. I made an appointment with a GP who referred me to a urologist.

About 10 days after the onset of the symptoms with my bladder, I experienced some pain in my lower back which was reminiscent of a disc herniation. I was referred back to my neurosurgeon, who suggested getting an MRI scan. The scan was performed in December, and the results were fast tracked to my GP surgery within 24 hours. The hospital radiologist noted that there were symptoms of CES in the form of urinary incontinence, and also remarked that the cauda equina appeared “compromised” and that there was no spinal fluid present within the spinal canal at this level. Despite this, my neurosurgeon adamantly remarked that they could not identify any compression of the cauda equina in any of my scans. They did confirm however that I had re-herniated at the same level on the right hand side, and that a spinal fusion would be the next step surgically should I wish to pursue that route.

I guess to an extent I should be relieved that the cauda equina is apparently not being compressed by the herniation. But the problem is, I am not entirely convinced that this is the case. I have seen two urologists regarding my symptoms, and am due to undergo urodynamic studies shortly. I have already had a physical examination, a cystoscopy and an ultrasound scan of my urinary tract – all of which revealed no abnormalities. I recently had a comprehensive consultation with my current urologist and he is not sure what the problem could be. It is almost definitely not stress or urge type incontinence, and he is leaning towards it being of neurological origin, however my current neurosurgeon’s diagnosis conflicts this.

In terms of my symptoms; It feels as though my bladder does not empty fully, and I always have to strain to get the last dregs of urine out. It seems to be an overflow type incontinence where small amounts trickle out on a regular basis, but I cannot feel this when it happens. When I do go to the loo, I know that I am passing urine, but I do not have any urethral sensation. I also discovered this morning, with a very full bladder after a night’s sleep, that I cannot hold it in – I didn’t wet myself and I made it to the loo with no problems, but then when I sat down I actively tried to see if I could hold it in, but some urine trickled out regardless. It was really strange as all of the muscles and structures involved were all contracting fully, but the urine still dribbled out. This only seems to happen when my bladder is very full mind you.

I am also really frustrated as any bladder dysfunction is an apparent red flag symptom wise, however pretty much everyone I have seen to date seem to disregard this, and just keep on advising me that I don’t have CES as there is not any numbness in the saddle area, and I don’t have any reduced tone in that region. I appreciate that other conditions such as diabetes can cause incontinence, however I have not been assessed for any such conditions. In addition to the incontinence and pain, my plantar/ankle reflexes are absent on both sides, and I have bilateral sciatica.

I have requested a second opinion and am due to see the neurosurgeon of my choice at the Walton Centre in just over a weeks’ time. This particular surgeon specialises in complex spinal conditions and CES is a one of his research interests. I am very keen to obtain his opinion on the matter, and hopefully will feel more relieved once I have received this – whatever the outcome may be.

I’m sorry that this is such a long post, and am super grateful to any of you who have stuck with it! I am quite a resilient person, however all of this is beginning to get me down a bit by now, especially as I don’t have a definitive diagnosis, am not receiving treatment or any kind of support. It is also psychologically difficult to deal with being incontinent at the age of 32 and having to use products akin to what you would find in a nursing home! I haven’t told anyone about my problems, and just really need to talk to someone who understands, and also who might be able to share their own experiences and opinions with me. I hope that I will in turn be able to offer the same to other members of the community.

Thank you so much for reading, I would really appreciate any kind of input.

 

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  • Posted

    Have you had your PSA checked?  Your dribbling sounds alot like the symptoms my husband was having with an enlarged prostate.  One thing - I had a microdiscectomy at L5 last year which did not hold - in two weeks they are fusing T11-S1, so be really sure how big or small the problem is.  In my case, they went conservative the 1st time and I was miserable within 2 months.  Also - be careful about your new doc.  Researchers can be more interested in the research aspect than the patient's actual needs.

    No apologies for the long post - I could write a book on my back symptoms, not to mention the fact that I had to shove a neurologist's nose in my symptoms before he thought about and confirmed thoracic outlet syndrome (different issue than this). But there is so much information out there that even the best docs can hardly keep up with it as they have so little time to read.  Don't be afraid to ask a ton of leading questions, especially if you think a doc needs to be led in a certain direction. 

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    • Posted

      Hi Susan

      Thanks so much for the reply.

      With regards to a PSA test, I should probably have clarified that I am a woman haha! Sorry, my bad.

      I purposely chose this particular neurosurgeon as he specialises in complex spinal surgery, and his performace data available on the NHS's website states that he has performed a far greater number of spinal procedures than many of his colleagues at the same hospital. I reasearched all of the consultants and his credentials seemed to be best suited to my complaints. I will definitely bear your advice in mind regarding his research interest perhaps taking over, however I also see this as a potemtial positive aspect as he will presumably be pretty well clued up on the subject.

      In preparation for my appointment I have typed out my history and current symptoms to make sure that everything is covered.  

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    • Posted

      Hi again Susan - sorry - I somehow managed to submit my response without completing it!

      Anyway, in continuation of my reply, I have made an effort to ensure that the neurosrgeon is fully aware of my history and symptoms so that they can be addressed appropriately. It seems as though we have shared the same frustration to a degree in terms of getting people to listen to you. He may well agree with with my current neurosurgical opinion regarding CES, however I feel as though my mind will be put at ease after obtaining a second opinion. 

      Another reason I wanted a second opinion was because a one level fusion has been suggested as treatment for my current condition. I am not in disagreement with this, but given that a fusion is a bit more of big deal than what I have had done previously I though it would be wise to double check.

      Sorry to hear that you will need to have further surgery in the form of a fusion. I hope it all goes well for you though and that you achieve some relief from your current symptoms. 

      Thanks again for taking the time to respond, 

      Cat 

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    • Posted

      Which level?  If it's L4-5 you must make sure that your L5-S1 is strong as its the foundation for the whole spine.  Good luck!

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  • Posted

    So sorry you are having to live with this condition, and deal with so many doctors appointments and various diagnosis. I do hope they get to the bottom of your issues soon. I do not know much about CES, only what articles and what is shared here on this site. It appears to me that CES can appear out of many symptoms, however, from what I've read, it's important to diagnos it early to prevent life time damage. One common denominater is trouble urinating and dificulty with bowel movements and numbness in the butt cheeks. (saddle area) The name CES is a latin word meaning horses tail. You could get the same numb sensation in the buttics area from riding a horse for a long time. But I see so many different situations on this site, and it can be really confusing . 

    My sons came on imeadiately with severe pain in his lower back, followed by complete loss of all sensations and movement from his waist down. Gladly it was diagnosed with in 24 hours and he is now in the process of learning to walk all over again. It's been 3 months since it happened. He spent 6 weeks in the rehibilitation hospital and now physical therapy three times a week. He continues to progress each week. His balance is returning and is able to walk  further each day with the help of a walker and knee braces. he hopes to progress to only a cain and then God willing all by himself. It is a long road to recovery but he works hard every day and hopes to return to work with a walker in another month. 

    I will put you on my prayer list, and keep up with your progress. Keep us posted. Blessings for the very best outcome. Mary

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    • Posted

      Hi Mary

      So sorry I haven't replied to your post sooner - I completely forgot! 

      Gosh, your son has well and truly been through the mill, I am sorry to hear that he has had to go through all of that, but pleased that he is improving slowly. I am very fortunate in that I am not having any difficulty walking and have no sensory loss, I honestly don't know whether I could deal with that. Your son sounds really brave and determined to get himself better - I wish him all the best and hope he continues to improve over the coming months.

      I am concerned that I may have a partial or gradual onset type of CES as opposed a full blown syndrome. I am hoping that my upcoming second opinion will put my mind at ease as I do not feel convinced by the current neurosurgical opinion. 

      Thank you for taking the time to reply, I do appreciate it. I will update on my progress once I have seen the neurosurgeon next week.

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  • Posted

    Hi,

    Hope this is not doubled up.

    It doesn't like me putting the links to articles in so, I'll post them seperately.

    I agree, no reason to apologise long post. It is good to hear from others with shared experience, it has certainly helped me.

    Of my own personal experience -slow onset CES I feel that not enough seems known of it, the form which is not caused by a central protrusion from disc. Or even understanding around how to support people living with chronic form after surgery. It is good to hear you can access a specialist and you sound like a strong advocate of your own health.

    I too had laminectomy L5 / S1. This halted the progress of the CES symptoms. I too did not have loss of 'tone' at ER, when I acessed one but did have numbness, progressive loss of walking and the extreme nerve pain that accompanies some with CES. I did not have MRI signs but the problems were confirmed in surgery ( branched nerve being compressed) and laminectomy stopped things worsening.

    You say the laminectomy at the start of last year relieved your urinary symptoms? Are you able to write down & track all your other CES / back / leg symptoms for when you see the specialist?

    The articles I have found over the years on slow onset and less obvious CES seem to point to urinary and accompanied bowel troubles being main indicator.

    I understand this is still case for many of us if we get a 'flare'. For me it is a sign to check in with physio, go through the OT advice, take anti inflammatories and rest. Yours sounds different as it was sudden loss of continence. It is good to hear you can still walk distances.

    The writings of Sarah Smith for arachnoiditis and on living with the chronicc form of CES on the support sites for CES and arachnoiditis have also been very helpful to me, before and after CES surgery.

    It is the section of this forum and these pages from Sarah Smith which helped me to seek surgery. It is also good to inform yourself of arachnoititis and scarring in this area 'fibrosis' something as causing similar symptoms of CES. I hope those resources may help you & the way they have helped me.

    Having surgery such as fusion, which a big surgery is a huge decision. Are you still recovering from the laminectomy? Best of luck with it. Let us know how you go with specialist.

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    • Posted

      Hi Maryanne

      Thanks so much for taking the time to reply. I really appreciate having the opportunity to chat about my symptoms as I am just floundering at the moment with no firm diagnosis, or any form of treatment or support in the meantime. Thank you for posting some links too, though sadly one of them has been removed by a moderator for some reason, and the other still awaits moderation.

      With regard to being concerned about having some form of CES, it's not that I won’t accept what my neurosurgeon has said regarding the cauda equina not being compressed, it's just that I do not feel at all convinced or reassured that this is the case. I know that he is an expert in his field, but I can't help but think that something has been missed somewhere along the way. In my mind, I think that I am quite right to dispute his opinion, as a combination of valid factors have led me to question it.

      To begin with, my urinary symptoms have all coincided with my problems I’ve had with my back. The fact that the laminectomy I had in February last year completely alleviated my bladder symptoms at that time is also a factor. The radiology report for my most recent MRI indicates that the cauda equina appears compressed, and that there is no visible CSF at that level of the spinal canal. The report was fast tracked to my GP, and stated that I have symptoms of CES, i.e incontinence. I have also read that bilateral sciatica and absent reflexes in the lower limbs is also cause for concern – I have both sciatica and absent ankle/plantar reflexes bilaterally. I also have reduced urethral sensation when passing urine.

      From a urological point of view, the incontinence seems to be something of a mystery, and it certainly is not classic stress or urge type. My current urologist mentioned that it seemed to be something like a neurogenic bladder, however the fact that my neurosurgeon has pretty much ruled this out complicates things further. I am scheduled to undergo video-urodynamic studies in a few weeks so it will be interesting to see what this reveals.

      I think that the current consensus is that because there does not appear to be a central compression, my urinary symptoms cannot be attributed to a CES type syndrome. There is however clear compression of the L5 nerve root. The GP’s I have seen have been quite supportive and forthcoming with referrals, but it just seems that unless I develop any sort of saddle numbness or loss of tone in that region, then all is well. This is somewhat perplexing though as it implies that the current degree of compression caused by the disc herniation is significant enough to cause CES, however the fact that I am incontinent as opposed to experiencing any numbness is failing to provoke any major concern. It’s like they won’t really act all that aggressively until that happens, which is confusing as bladder dysfunction is considered a ‘red flag’ alongside numbness, but in my particular case it is apparently insignificant.

      I have also seen all of my scans, and of course I am not an expert, but to my untrained eye, the current one does not look too great. It seems as though there is some fairly significant compression going on to me. I will try and attach an image in a separate reply so you can see what I mean. Obviously I do not expect anyone to interpret the scan or anything, I just want to try and illustrate my point further.

      My appointment for a second opinion is a week tomorrow (Monday). I have listed my history for the neurosurgeon including the development of urinary symptoms alongside the disc herniations etc, and have also made a bullet point list of my current symptoms in greater detail, in addition to a list of questions I would like to ask him. Hopefully this will ensure that nothing is missed out. I recently did the same for my urologist which he seemed to find very helpful. As mentioned in my initial post, this particular neurosurgeon specialises is complex spinal procedures, and also lists CES as a research interest. I think that I will feel more reassured once I gain his opinion, even he is agreement with the current neurosurgical opinion.  

      I am very lucky in that I do not have any weakness or difficulty walking, however the fact that I am incontinent is making life quite difficult, not to mention miserable. I still work full time and enjoy going out walking and rambling, but am now limited in terms of how far I can go as being active in general seems to make the incontinence worse, and it gets physically uncomfortable for me even when wearing a heavy duty pad. I am really concerned that my scan has been misinterpreted by my current neurosurgeon or something. I just have a feeling in my gut that the nerve compression is causing the incontinence, and that if this does in fact turn out to be the case, well, I am not very likely to recover healthy bladder function given the amount of time which has elapsed by now.

      Thanks again for taking the time to respond, it’s good to talk about this people who understand and don’t just fob you off! 

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    • Posted

      Hi,

      I am glad you find this site a good source, I have too, it has helped normalise things that just shouldn't really be normal for me but then they are.

      I won't try & post links again. Not sure why it would delete links to public education & articles but thats ok. The links I had sent were just to the Cauda Equina .org support site & the Arachnoiditis support site for writings of DR Sarah Smith- some really good insights into pain management and other ideas for people living with these spinal nerve problems- written by a medical doc that suffers herself if you feel like googling.

      It really sounds like what you are living with sounds like a form of CES or something similar to me, but I am no doctor and only a fellow sufferer. I agree from what you say it is really telling that you had relief from your bladder symtoms with the laminectomy.

      I can share my experience that I was never diagnosed by a specialist before surgery- only by my GP and Physio whom initially picked CES up on red flags from talking to me. The nuero surgeon then did not 'see' MRI CES but it stopped progressing after a laminectomy and reason for it was then 'seen' in surgery with the nerve being compressed- but not fully. I think MRI s can not show whole picture and doctors including the more specialised ones should be listening to patients for what is actually happening for them. It is good to be an informed patient too & have docs you trust. If your nerve has only partial compression maybe it could grow back? The scarring/ arachnoiditis can cause incontenance too I understand and that develops after surgeries..

      I am glad your appointment is soon, if it is surgery that can alleviate the incontenance then there is a time frame. Well again only talking through my own experience, the slow onset stuff CES was going on over a period of weeks & was also effected by my physical activities. It was not getting better on it's own only worse. I sometimes wonder if a laminectomy sooner would have helped, but just over two years in, things are still changing by tiny amounts so I remain hopeful. Grateful too that it was caught. I'm really sorry to hear of your incontinence effecting activities, I don't have that.

      Sorry to say but I agree, your MRI looks pretty bad. Would this not be seen as partial CES ? What did your GP say? As I said I wont try & send any links as site doesn't seem to like it but the article I had read in an article by 'dynamic chiropractic' vol 35 no. 3 'Beware the partial or complete cauda equina' this is the one that talks about urinary and bowel troubles being most important indicators then all the others as secondary.

      I hope you can get some help and support, whether that is via surgery or other places like a physio or even OT. These people have helped me with their body knowledge. My physio helps with pelvic floor stuff too, which I think helps me with what she calls 'twitchy bladder' from the CES. Well best of luck with your appointment

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    • Posted

      Hi

      It's a shame they won't allow you to post any links, I assume they have their reasons though! Thanks for providing some information regarding the articles and authors, I’ll have a good search later on. I do find it strange and frankly concerning that nobody appears to be overly concerned about the sudden incontinence (which as mentioned previously is proving difficult to diagnose from a urological standpoint) in conjunction with my history, current symptoms and what the MR scan has revealed. A lot of articles and information I have read do seem to indicate that something a little more sinister could perhaps be going on here.

      I am worried that in similar fashion to your experience, despite the fact that the neurosurgeon has apparently not observed any significant compression on the MRI, there could in fact be partial CES which perhaps only surgery would reveal. I just find it really odd that he has stated so adamantly that there is absolutely no compression of the cauda equina, and that my bladder dysfunction can in no way be attributed to the disc herniation I presently have. Appointments do tend to be a little hurried with him so I didn’t get an opportunity to discuss my symptoms at great length, however he did receive a copy of my urologist’s (at that time – I am seeing a different/better one now) correspondence which stated that I had presented to him with an overflow type incontinence which developed suddenly. It also stated that my cystoscopy did not reveal any abnormalities, and basically, he didn’t know what the cause was – hence I appointed another urologist, who thankfully seems to know what he’s doing!

      The neurosurgeon was completely dismissive of the hospital’s consultant radiologist’s remarks regarding my scan, i.e that the cauda equina appeared to be compressed, and he basically said that she was ‘just a general radiologist who looks at chest x-rays all day’. So, in other words, her opinion is void in his mind. He has also stated in his correspondence that I do not have any signs or symptoms of CES, such as saddle numbness, however in this particular letter he has omitted urinary incontinence as a symptom. He was also a little annoyed that the hospital radiologist commented that my most recent scan appeared virtually identical to the previous pre-laminectomy scan, and other than the fact a laminectomy had been performed, there was still a significant amount of abnormal tissue in the spinal canal. I could go on, but there’s a couple of contradictions in his previous and most recent correspondence that are making me question his opinion and subsequent diagnosis. In terms of fibrosis, this has not been mentioned at all, however I will put it on my list of questions for my appointment with the other neurosurgeon next week. I did work on trying to reduce scar tissue formation with my physio though so hopefully this won’t be too much of an issue, but you never know!

      My GP has not actually seen the scan and has only received the initial written report from the hospital radiologist and then my neurosurgeon’s opinion. It is extremely frustrating for me at present because now that my neurosurgeon has confidently declared that I do not have any kind of CES, they (GP’s) are a tad indifferent about my symptoms. To be fair they have willingly referred me for second opinions etc, but when I enquire as to whether I could have a neurogenic bladder or similar, they just tilt their head to one side and say that if a neurosurgeon has said I don’t have CES, then they can’t really argue with that. I do get their point, and they are not particularly stubborn about it, but I just feel to an extent as though I’ve had to battle for any kind of intervention. If I didn’t keep on making GP appointments and researching my symptoms and the consultants I would like to be referred to, then nothing would be getting done about this. They possibly think that I’m a bit of a pain in the backside by now, but I suspect that if they were wetting themselves at the age of 32 then they would flipping well want something to be done about it too! I have only had 4 appointments and a couple of conversations via ‘phone about this in near enough 6 months though, so I’m not being too much of a pest!

      I appreciate that I am by no means an expert, but surely it can’t be completely beyond the realms of possibility that even if I do not have any sort of CES, the nerve compression could still be causing the incontinence. It no doubt seems that I am being pedantic and refusing to accept the current medical opinion, but I genuinely think that something is askew here. I mean, if conversely the hospital radiologist had also confirmed that the cauda equina was not under any compression, and my urologist and/or GP had diagnosed an alternate cause for the incontinence by now, then I would find it easier to accept. But this isn’t the case and I don’t feel at all confident that the neurosurgeon is right on this occasion. I may well eat my words, but hopefully this upcoming second opinion will confirm things and help put my mind at ease.

      Thanks for taking the time respond again, I really appreciate it and hope that you are doing well 😊

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  • Posted

    Thanks reply,

    It sounds like you are doing everything you can do get to bottom of things. I seem to remember reading somewhere that urinary trouble paired with sciatica are red flags for spinal conditions, even where it is not CES. Your nuero's attitude sounds a little bit closed off to questioning, with only taking minimal time. All your steps sound very reasonable and logical to me, he sounds a bit funny for not linking bladder symptoms in. I hope the specialist has the good attitude of taking time to listen. The links have popped up now thanks to moderator, they must have been ok. Take care

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    • Posted

      Something certainly seems a bit off to me - the cynic in me is even beginning to question whether he is attempting to cover something up! Admittedly, that is highly unlikely, but his dismissive attitude regarding the whole thing is not particularly reassuring. You would think that with something which has such a high medicolegal profile he would perhaps be a little more cautious, too, especially given my history, current ‘red flag’ symptoms and an MRI which apparently shows the cauda equina is somewhat compromised. 

      I am just struggling to believe that the current degree of compression and my concurrent symptoms are in no way connected, especially when everything I have researched alludes to the contrary, and the hospital radiologist and current urologist's opinions differ from that of the neuro. Hopefully by this time next week I will have a better explanation of things and will know for sure what is going on, and how to proceed. I can't wait to get to the bottom of this - literally counting down the days now!

      Thanks for all of your help and take care smile 

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    • Posted

      Oh I know what are you going through as I am in a very similar situation. Please update as soon as you can and good luck.
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