Could this be slow onset CES?

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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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  • Posted

    Forgot to attach the images so here they are.
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  • Posted

    You have similar issues as I do with c.e.s but it could be so many things. I saw 5 different doctors before I was diagnosed so don't give up... Have you been referred to a neurosurgeon?

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    • Posted

      Hi Jessica,

      Thank you for your responses.

      My surgery has several GP's and I've had to deal with them all. A couple of months ago ago I had a long conversation with one of the better listeners and discussed my thoughts about slow onset CES. This GP said she had spent time working with spinal surgeons. I also printed off a case study (sloe onset CES) for her to read which she seemed grateful for. She agreed to refer me to a neuro surgeon. I heard nothing for weeks.

      Then shortly after my injection I again saw her and she said she would refer me again and later told me that her only option was to refer me to an orthopaedic surgeon who might refer me to a neuro, she could not do the referral directly. I've heard nothing more about any of these promises.

      Steve

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  • Posted

    There are so many people abusing pills it's sad but most doctor's see someone with a chronic condition as someone who just wants the pills. I screamed and cried for an MRI and the doc flat out told me all I wanted was pills. I went home so defeated and sat in so much pain I wanted to end my life until I got in contact with the neurosurgeon who had me rushed to the hospital and straight from an MRI to surgery but it was too late and a lot of damage had already been done. I was only 27 and had been told since I was a teenager my pain was mild scoliosis and sciatica.

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    • Posted

      It's so sad that you guys have gone through this, especially when the effects are often preventable. I agree that Docs are wary of those that want pills all the time. In my case, I actually started refusing pills several years ago as they don't work and I wanted a referral for further investigation not something that might mask the pain as I deteriorate further.

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  • Posted

    Steve, 

    I had slower onset CES and now have CES-r as a result of incompetence. Unfortunately someone saying you don't have CES doesn't mean you don't but they throw a wrench in how you are viewed. Be sure to keep a journal of symptoms as slow onset can be harder to detect change as the inflammation can mask some things. Listen to your gut and your symptoms, take a second set of ears to appointments with you so they can't just blow you off. They can spot acute onset CES but slow CES not as easily. I have permanent damage as a result of poor management.

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    • Posted

      Thanks chrioli.

      Do you have any posts in this forum describing your experience and/or symptoms that I could read?

      I think you're right about someone saying you don't have CES throwing a spanner in the works. On my last GP visit, having just been told by the ER doctor that I did not have CES, the doctor basically said two people have told you you don't have it so what am I supposed to do? 

      I can understand her reaction, but I explained that ER doctors are not trying to diagnose my condition, they are just trying to determine if I need emergency surgery, and they concluded I didn't but that I still need to be diagnosed and due to the ED/gential numbness I need it done soon. She offered to request another referral but there was zero urgency about it.

      The only real help I have received has been initiated or paid for by myself and I really can't afford any more but I would be prepared to pay for another neuro consult if only I could find the right neuro with CES experience.

      Steve

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    • Posted

      Also, how long did your CES take to progress to CES-R?

      My reading suggests that for most slow onset cases the transition from CES-I to CES-R happens within a few months usually, but in some cases it can take years.

      Were your symptoms constant? Once a new symptom appeared was it permanent? Or would it come and go for a while before becoming permanent?

      For me it seems that being still makes it worse, whether that be standing, sitting or lying. I'm thinking more about the genital numbness and urinary/bowel function here. Other things such as the sciatic pain are usually worse when standing or walking.

      Thanks,

      Steve

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    • Posted

      I went 41 days from injury to urgent surgery three years ago. I was not a typical case of emergent onset. Symptoms came on slowly with saddle numbness and overflow incontinence at the end. I noticed bowel changes right away. I have lower leg weakness, numbness saddle anesthesia, fasticulation and bilateral shocks. When I stand or walk it's like having really bad toothache pain in both lower legs and feet. I take lyrica and cymbalta for nerve pain. I have similar bladder symptoms as you do and have to self catch because of  back wash to kidneys and detrucer muscle impairment. Get a consult with a urinary doctor. CES is diagnosed by symptoms an MRI isn't as conclusive as they say. Every test I have had backs up my symptoms. Trust me, doctors don't like  to deal with CES because it is so litigious. It's an ugly battle to get care. I understand they don't want to do surgery and it's true, some people heal from a ruptured disc. Mine was a mass effect on the nerves. 

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    • Posted

      This is really useful information, thank you. And I'm sorry to hear how badly you are affected by this, its so sad reading other peoples stories of pain on here, thank you for taking the time to share your experience with me.

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  • Posted

    And Steve cesi is still CES.
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  • Posted

    I would write to the patient liaison officer give a belief history say u are not happy with the treatment u received as u feel u do have a form of cauda equine. And if u do end up in full compression where they had a chance to do the surgury. Say if u are life with mobility and bowel and bladder problem.

    Your will seek to employ a solitors to take up ur case.

    If u have house insurance u can use that 1st the will give u a list of solitors u can use. If u have not got this seek out a no win no fee.

    They will right to the hospital I think that will get u the surgury u need.

    I am experience at this I have established cauda equine short story my gp was great he gave me a letter I was seeing him about some thing else.

    Any I was sent away after 4 half hour wait. The nice doctor said I was trying to que jump he was not a middle man and he had no intention of admitting me. I left a not with my gp he went mad on the Monday I had gone from Friday to Monday dragging my left leg. Anyway I got admitted left in bed with a wee bottle by then I could no feel to go Tuesday afternoon they done a Mir scan I was in bed early hours of weds morning when a 999 ambulance crew got me on their trolley I was blue light across South London to king at den Mark hill straight to pre op bloods and blood pressure told I needed urgent back surgury. 7 hours it took them l45 had been hang out and and had joined together it was a mess they had snap of taking every thing out to my coxic bone. And pieced the thoric sack. I was a mess. I don't remember much the 1st week. The surgeon said they relieved the compression but I thought I had suffered serious nerve damage I would lose all feeling to see or poo. Anyway I had right side weakness I had some bad falls the put me in hospital. He was right i struggle to see and poo my bladder stop so 999 again I had a subpubic catheter for 18month I had a permanent colostomy then I had a ieal conduit wee stoma I have had 9 operation for revision of my stoma site 3 different hernia and now the missed it in April this year as I did not see the nerou consultant for my back at guys now he see me 1st week this month I was straight in I had compression of my spine c5c6c7. I had a operation on the 13 I was told it was bone on bone discs had gone bit were compressing. I had 3 titiaum spacer titiaum plates and cages. I am still home in bed as it's a big surgury. I have got to go in for another revision of the colostomy stoma its gone yuk. Still that to be done plus I think I have bone on bone in the low back. They never support the back inside. So the pain is just as bad leg feet right leg go's died with out warning. I am numb from my waist down to my thighs I still have every related pain to cauda equine I have established cauda equine.

    I at to swap to guys trust as king merge with princess royal in orpington Kent. I sued them and a private urogist. He did not recognise the red flags I was showing with my bladder. I had the urgent surgury in Aug 2008 I had a out of court settlement in January 2012 I would rather have my life back if the had operated in the 1st 48hours I might of had no damage. That nice doctor wrote what he had said to me in the notes I had so many expert doctor. Just what he wrote and the lack of care. Anyway I think you do have cauda equine the don't always see things on the Mir look at my last operation it did not show our bad the site was. So u start throwing it weight about. Tell a few white lies start using a stick.

    Get a solitors if u have to. You don't want to end up like me I am the worst cauda equine patient in the UK and USA. That's fact I am disable I rarely go out. Please use my advice my friend.

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    • Posted

      Thank you so much keith.

      Ive read several of your posts on this forum and can only offer my sympathies for the nightmare you are experiencing. It does spur me on to keep nagging for help, which I will do again tomorrow. I will also write a letter as you suggested and may well get I touch with a specialist solicitor to see what they think.

      Thanks again,

      Steve

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