Symptoms of Cauda Equina Syndrome but no firm diagnosis?

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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