CES symptoms

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Hi, I'm new to this group and I'm just hoping for some support and guidance really. In June 2016 I was knocked over, I was thrown into the air and was in almost a feotal position when I landed so my coccyx took the impact. I had an ambulance come out because I couldn't move due to the pain, they gave me gas and air and some ibuprofen and said that there would be no point taking me to the hospital as if I had fractured it there is nothing that can be done and to expect pain for 4-8 weeks while it heals. In September I started experiencing sever sciatica symptoms and was given diclofenac and omeprozole, I took this as instructed and it had no affect on my symptoms. The symptoms started with the shooting pains in my back down all the way down to my left leg, I visited the doctor on numerous occasions and have been given all types of medication, amitryptaline, co codomol, tramadol, diclofenac, diazepam etc and nothing is helping me. The symptoms started to change in the the shooting pains were less however I had sever weakness in my left leg so when I was walking my knee would buckle with every step. I soon realised I had no strength when I attempted to tip toe to reach something and just landed flat footed. Then I started having the tingling in my leg and saddle area and pains in my muscles. I saw a doctor again who carried out a full examination on my body and found that I had next to no reflexes in my left leg, loss of sensation and also very low rectal tone. She called A&E to advise that she was sending me down and I needed to be seen by the orthopaedic team asap. After going trough the same examination they carried out an MRI which showed my L4-5 disc was bulging impinging my left side L5 nerve roots. My L5-S1 was also bulging with disc extrusion also compressing mainly the left side nerve root however also on the right side. I was told I would need an operation and that the orthopaedic surgeon would consult with the operating hospital to 'categorise' my situation. I was then referred to a muscular skeletal clinic who advised me I would not be having the toleration and they hoped it would heal itself, to continue with medication, he said it will be a long maybe 2 years for me. Up until the last couple of months I had not felt any pain in my right side however I am now experiencing the shooting pains, my entire right leg is continuously tingling and from my knee down on my left leg. I also have a lot of discomfort around my bum and front, I'm having difficulty sleeping and I'm at my wits end with this now. I'm a 25 year old female, live on my own and work full time, my work requires me to sit all day which I cannot physically do and this is having a major impact on my mental health which I have been suffering with for about 2.5 years now and already taking anti depressants. I've stopped taking all of my medication as I could still feel my back pain but it was also causing me problems with my bowels in that I went from being long term constipated to very very loose, if the meds weren't helping my back it seemed pointless to give myself another problem. My life is currently in the hands of the NHS and it kills me to know that I may be left like this, I am scared. I have an appointment this week to hand in a letter to discuss getting a second opinion and have also made an appointment to see the doctor that referred me the first time as she was the only one that has taken this seriously. I apologise for the long post, sad as it is it's nice to know other people suffer too. I'm worryingly low about this and any information or advice any of you can give will be greatly appreciated. Thank you for reading! Emma

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5 Replies

  • Posted

    Hmmm it is very unfortunate that you are also experiencing a situation like this because it is psychologically traumatising especially when the tingling persist for a longer period couple with numbness. I didn't hear you said that you are having numbness as a symptom. If that's the case then I can assure you that the situation is not hopeless. Seeking the correct medical assistance and at the quickest possible time will save the situation. Unlike me who was diagnosed of CES a year ago but was afraid to undergo the required surgery to correct it until after a little over a year when I could not walk at all and could not also sleep flat on bed due to severe pain from my spinal cord before I was operated upon but I am steadily recovering and hoping to gain my full healing in about a year time. The advice I want to give you for now is to as a matter of urgency consult your doctor and let him tell you what you need to do quickly to correct the situation. If it's the surgery then you do it quickly because sometimes delayance can be dangerous. I wish you all the best

    • Posted

      Thank you so much for your response. I've been careless with regards to the numbness as in I've just not been concentrating due to all of the other symptoms, but nothing that I am aware of. The doctors have told me that there is nothing that can be done if the decision has been made, my appointment on Wednesday is to request a 2nd opinion because I don't understand how they can leave me in this condition. I can't sit, stand or lay comfortably due to the aches and pains. I can only walk very slowly or I get the pains in my legs. Life is so hard at the moment and already suffering with depression is making this very hard for me. The orthopaedic doctor I saw after I was referred said that they want to leave it to see if it will heal, the herniated disc MAY contract back in and the fluid that has leaked MAY get 'eaten' by my body. He basically said it will be a long 18 months to 2 years for me but I can't deal with it.

  • Posted

    Dear Emma, I so sorry to have to welcome you to this site, but it's the place to be for encouragement and "like" symptoms. I have never ever heard of the ambulance EMT's giving advice or diagnosing an injury. Their job is to get you to the hospital with out further injury, not to treat you. The big word here is, "IF" it had fractured ?" They can in NO way know what or the extent of your injury unless they are equiped with a CT scanner in the ambulance.   Unless something is different where you live from where I live. MI.

    I am wondering how you came to come to this site for CES ? Were you or someone else suspecting CES.  I know CES happens due to an injury and also there is something called early onset of CES which happens over time. I don't know much about CES only what I've learned from my sons experience and this site and from reading many articles about it. I've learned it starts with a disc pressing on the spine. First symptoms is tingling or numbness in the foot, or in your saddle area. Also urine and bowel retention.  The faster you get it corrected the better the ourcome. It might do you well to ask your doctor about the possibilities of this being early onset of CES. Have him give you a printed diagnosis so you have it for future refference. 

    Pain meds do have a neg effect of the bowels, mostly constipation. My son took bowel softners. 5 over the counter a day. He is eating more fiber and does not have the issue any longer. 

    Deffinately get a second opinion. I would first ask it they are familiar with CES ? I would also ask, if they don't think it is CES, WHY they don't think it's CES ? And have a print out of that as well.  I know I'm sounding perinoid, but I've read some pretty awful mistakes doctors have made my not reconizing the symptoms of early onset CES. I hope this offers some things for you to think about. Remember I'm not a doctor or even a nurse, only speaking from what little I've experienced and read. I will keep you in my prayers for a successful outcome. Keep your head up and don't give up. Blessings Mary

    • Posted

      Bless you. Thank you Mary. With regards to the EMT I agree, being that it could have been potentially serious it would have been precautionary to take me in, however it was probably unlikely an MRI would have been completed then.

      After visiting the doctor so many times and being given different medications that were touching my aches and pain me I felt completely let down so I started to do my own research, typing in each of my symptoms all lead to the same thing. CES as a result of the impact of my fall, the impact squashed my discs. It took me such a long time to finally get a doctor to listen to me and fully examine me. My hospital discharge letter states that there is no obvious CES but my condition is changing and my symptoms are changing.

      I signed up to this site this evening in the hope to get support however I read your sons story a couple of days ago. I'm pleased he has gone against everything they said he wouldn't do and I hope he has a full recovery. I sounds like a very strong and determined person. Thank you Mary, I appreciate your time x

  • Posted

    Hi Emma

    I am in a similar situation to yourself in regards to having symptoms of CES, but no firm diagnosis. Luckily I have not had to battle too hard for second opinions etc, but I am still in limbo at the moment, which is frustrating!

    I'm glad to hear you have an upcoming appointment with the GP who initially recognised your symptons and arranged an orthopaedic referral. Perhaps this time around though it wouldn't be a bad idea to ask to be referred to a neurosurgeon instead to see if their opinion differs at all? I would also recommend sitting down one evening and listing your history and current symptoms in full to make sure that you nothing is missed out - I have recently statred doing this as I almost always forget to mention something or other during appointments! 

    In terms of the herniation healing itself, I have previously discussed this my physiotherapist a few years ago and apparently it is indeed a possibility, but given that your pain does not appear to be settling at all it does seem very unfair to just leave you to it for another 18 months minimum. From your intitial post I gather that the MRI scan did not reveal a central compression which I think is generally associated with CES, but when considering the fact that some of your symptoms are indicative of CES and the pure fact that the disc herniation could be progressively worsening, I reckon they are beiong a tad careless to be honest.

    I would say just keep on badgering them! Hopefully your GP appointment will go well and you will at least get another referral to someone who might be a little more forthcoming and be able to help you. Have you at least been offered a referral to a physiotherapist in the meantime? They could help with the pain and give you some exercises to help strengthen your core etc. Physiotherapists are generally well clued up on these subjects (sometimes more-so than medical Dr's in my experience!), so it wouldn't hurt to gather their opinion too. If you can't get an NHS referral for regular physio sessions, perhaps you could pay for one or two private sessions just to get assessed and gain their advice regarding CES? 

    Best of luck for your upcoming appointment - I hope you manage to get a referral for a second opinion


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