Could this be slow onset CES?

Hi all,

This could be a long post, please bear with me!

I am a 43 year old man that has suffered with back pain for almost 25 years. At first it was mild to moderate lower backache that would last around a week before feeling better. As time went on these episodes became more frequent and of longer duration.

Approximately 8 years ago the pain became almost constant and very debilitating. I believe at that time I was experiencing nerve pain on both sides of my lower back/upper buttocks. Throughout this time I have only ever been offered painkillers (Codeine) and anti-inflammatories (Ibuprofen) until about 3 years ago when I begged my GP for something other than the pills that don't work anymore. I was referred for physio which I got about 4 months later (lasted about 6 months) which seemed to help a bit at first but I quickly got worse again. I then tried a private chiropractor for 6 months with the same result.

Shortly after the chiropractic finished (I felt it was a waste of time so stopped) I started experiencing sharp shooting pains in both thighs, almost electric shock like pains.

I saw my GP again and was offered more physio which took about 3 months to arrive. The pains were constant during this wait.

I had 3 or 4 monthly sessions, and with the exception of the initial visit, I saw the same (NHS) physio that had seen me two years prior. On the first visit a junior/trainee physio did the initial examination where I explained I had almost constant shooting pains in both thighs and also pointed out that my spine was somewhat curved (slightly S-shaped from side to side as opposed to front to back) and my right hip was sticking out. He went away and spoke to his boss and returned with some leg stretches for me to do at home.

I visited again once a month for the next two or 3 months and each time I had no manipulation but was asked to continue the stretches. I never felt any better during this time and by the time the next monthly appointment rolled around the thigh pain had developed into an awful bilateral burning pain in the L5 nerve root distribution on both legs. I was barely able to get out of bed for the final appointment due to the pain and not sleeping properly for a very long time. I was subsequently discharged from physio for missing that appointment.

I visited my GP a few days after the missed appointment, explained my new symptoms and the fact that I could barely walk. He prescribed amitriptyline for the nerve pain and sent me packing.

The following months involved more frequent GP visits and long discussions trying to get someone to refer me for further investigation. I was constantly told that it would not help me and regardless of the MRI results the treatment would still be pills and conservative treatments such a physio. During discussions it became apparent to me that some urinary and bowel issues I was experiencing and had experienced in the past couple of years could be related to compressed nerves. I had not mentioned these symptoms to the GP until now as I felt they wouldn't do anything and I was managing. Little did I know that it could be a sign of a serious problem.

My bladder and bowel symptoms have included the following, with some symptoms coming and going and others remaining.

Difficulty having a bowel movement. Having to strain such that it feels like I am having to force my anus open by pushing and squeezing with my abdominal muscles. Other times things can feel almost normal but this is increasingly rare (10% of time I may go without needing to force it out). I am also experiencing several days between going lately whereas I used to go daily.

Increasingly bad external hemorrhoids, and varying levels of saddle anaesthesia (can feel touch but sensation is very altered). At least one time I have passed a bowel movement and could not feel it coming out due to the numbness.

Also feels different and numb when wiping.

Difficulty initiating urination, with a few occasions be unable to pee at all. I still get the hesitancy every time but the wait is usually short at about ten to 20 seconds but has been well over a minute in the past (about 2 years ago).

Urinary frequency. An almost constant feeling that I need to urinate. I can hold it in and can usually pee ok though sometimes flow is reduced, particularly first thing in the morning. I also occasionally wake with an over-full distended bladder that is painful. On these occasions, I have great difficulty peeing and learned to use my stomach muscles to force the urine out. Even when doing this flow is relatively slow and it takes a while to empty my bladder.

Around April/May this year I visited my GP for the worst case of thrombosed external hemorrhoids I've ever experienced (the pain was as bad as my sciatic pain, absolutely agonising). After explaining my issue he was totally unhelpful, didn't examine me and spent ten minutes telling me I shouldn't be referred for further investigation as operations are painful and risky. I later visited an OOH GP due to the pain and was immediately referred to my local hospital.

I believe my GP was negligent by not examining me and so I took the opportunity to visit again with a full back history including photographs of my curved spine from the three years prior. I hoped that he may listen this time and he did, and agree to refer me for further investigation. About a month later I received a letter saying the wait time was 9 months and decided to get an MRI privately as I could barely walk, and couldn't walk without significant radicular pain. By this time the radicular pain had moved almost exclusively to my right side.

The MRI shows a large central herniation at L4/5 and both nerve roots at the same level are compressed. The central herniation is not completely compressing the caudal nerves root as there is spinal fluid still visible (image attached).

Following the MRI I was offered a nerve root block for the right L4/5 root and an operation. The injection could be rushed through due to my pain level, and took place about 6 to 8 weeks later. The op waiting list is 18 months.

Following the injection I have experienced numbness and paresthesia all over my body for 24 hours or so. A week or so later the numbness and paresthesia returned in my feet legs and genital/saddle region. I am now also experiencing erectile dysfunction as a result of the penile numbness. This numbness (really altered sensation) is still present and has been since mid October. I am worried that the feelings may never return.

More recently I have also had three days where I would suddenly start vomiting out of the blue. It feels like it is associated with the nerve sensations I am feeling so is quite worrying. 

I have constant back pain at the L5 level. It's not currently agonising but it is a strong pain and keeps me awake at times, it's also too strong a pain to just ignore during my limited daily activities.

I've been virtually housebound for several years with little social life. I still work but only because my employer has allowed me to work from home 3 days a week. I go into the office 2 days (50 minute commute each way), sit at a desk all day (with occasional breaks to walk around) and recover during the rest of the week at home where I can get more comfortable (never pain free but better than the office).

Since having experienced these altered sensations in my genitals, saddle area and legs I have had three visits to A&E. The numbness had subsided a fair amount on the first visit and on the second visit a few days later when it returned and seem to remain I was turned away from A&E by the triage nurse who said the Doctor wouldn't see me as my symptoms hadn't changed. They had, and I told her that, but she still turned me away. I also had further information with me that could be useful, including my MRI images and report, but the Doctor still refused to see me.

My last visit was at another hospital after I had experienced two days of significant bilateral leg weakness. I called NHS who said they would send out a paramedic to assess me. Over 6 hours later I got a call to say they had no ambulance available and they arranged a taxi to take me to hospital. By this time the leg weakness had mostly subsided. During this visit I expressed my concern about slow onset CES and they assured me it was something they always consider. I was given an MRI that same night and anal tone and pin prick sensation tests. I told them I had very altered sensation down there but could still just about feel the surgeons light touch. The pin pricks felt muted, without the sharp pain I would expect. I also explained the various bowel/bladder symptoms I have experienced in the past and still experience to varying degrees. I also mentioned the erectile dysfunction I had due to the penile numbness (about 3 weeks of it at that point) and the leg weakness.

The first surgeon to see the MRI told me he thought I may have CES and whilst he thought the operation may not be urgent (as in now) he did say they would probably arrange for me to be operated on the following week. He also said I should stay the night so he could discuss it with the spinal team in the morning. The senior consultant examined me in the morning, reviewed my MRI, and told me the penile numbness could not be from my central herniation and he didn't seem to consider my bowel and bladder problems a related issue. He suggested I return to my GP/spinal consultant and follow up with them and told me that I did not have Cauda Equina. He said my MRI showed I still had spinal fluid at the level of the central herniation and therefore the nerves were not being compressed. I left feeling pretty hopeless.

Thankfully, the injection did help my leg pain but I have a feeling that as my spine is now a bit straighter, the points of nerve compression in my spine may have altered slightly and are producing the new symptoms.

I currently have altered sensation in my legs, buttocks, lower abdomen, hips, penis and saddle area. I have had this for approximately 6 weeks now and it doesn't seem to be getting any better, only worse, thought he progression is still gradual.

What should I do now? I am scared that I may progress to CES-R whereas I would consider myself CES-I at the moment.

All doctors have said come back when you are experiencing bladder or bowel incontinence, which is just too late in my mind.

I have attached two images from my MRI, and as they are a little dark I have highlighted the edge of the disc herniation. At my most recent A&E visit I felt that it was the MRI that led to the senior consultant saying I didn't have Cauda Equina so I would be interested in how my MRI compares to those that have had a diagnosis of CES.

I also think that my symptoms vary according to the physical position I am in. Perhaps that's why my symptoms are usually worse in the morning after laying in bed for hours on one side or the other - I cannot sleep on my back, and haven't for over 12 months, due to sciatic and back pain. I also notice increased symptoms after a long period sitting down or reclined. 

Thanks for reading.

Steve

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