Symptoms of CES

Posted , 8 users are following.

Could anyone help me out, I was diagnosed with CES in 2014, in 2014 I started experiencing pressure from my saddle area, has anyone else experienced this feeling, as I was left for 2 weeks b4 surgery and one of tge reasons was I didn't say I was numb I said I had a pressure feeling!!!!

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12 Replies

  • Posted

    Yes,I have had saddle pressure and numbness for years.Last May it seemed worse,the pressure,I then became paralyzed from the waist down.I now have radicular neuropathy along with all else that I hare.Thanks to my pain dr.,an internist and neuro thay got me walking again with high doses steroids and neurontin.It only lasted 21 hours.But I still have all the pain.
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  • Posted

    How are u now ces gos different ways extreme like me up and about back to normal normal being 2 years later.
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  • Posted

    I .ve been diagnosed with CES in2016 saddle  pressure  is normal condition.
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  • Posted

    Yes all kinds of funny feelings for people living with 'chronic CES' or what comes after surgery. Some of us are luckier than others with mobility & so on.

    I agree pressure could be a good word, not just numbness -sometimes I feel that right across lumbar area too or in calves like the blood is having trouble moving so it feels numb too on one side more than other. I sometimes wonder too if I had had surgery sooner in the matter of weeks too if it would be different. But we can't go back and choise what doctors will do. I guess we all have to try and find ways to live with whatever level of CES things that have stuck around after the two years of nerves trying to grow back. Take care.

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  • Posted

    Scott

    I had the feeling like my buttocks and groin felt like a bad toothache. A deep achy feeling and I couldn't really feel my lower legs. But they were not numb like when you sleep on your arm wrong. It was different...and still is. I didn't realize how numb it was because of the pain. It is kind of a pressure feeling. People experience nerve sensation differently I assume and everyone has different ways of expressing it. I went a little over a month before diagnosis.

    Chrioli

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  • Posted

    Yes I had very much the feeling you describe. When ever I was asked and pain I'd say I have a feeling of pressure inside my abdomen or buttock or somewhere inside. I could never say exactly where it was. As for numbness I never realized how much was actually numb except my privates. I also was left an extra month after my mri confirmed CES because I didn't have the textbook feelings. Over 2 years post op and I still have that same heavy feeling plus all the other issue including 24hr pain.

    Sadly the doctors don't error on the side of caution when we have 8 of the 10 markers. If they did I'm pretty certain you,I and countless others wouldn't have to live like this.

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  • Posted

    Misty, you said heavy...yes, that's a great way to describe it. I had and have heaviness in my lower legs and sacral area. I'm so afraid to stray far from home because of all the complications of ces. One of the hardest things is having family say if you would just walk more. Hmmm. It's like walking on two wired toothaches that feel heavy and then I get random sharp shooting pain and muscle cramping. No thanks. I will hang out at home. Argh! What a life😏 Still figuring out what coping looks like.

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    • Posted

      Yes chrioli, you word it well, still figuring out what coping looks like....I guess we can only take it day by day. Doesn't sound awfully understanding of your family- do they need some education on how CES differs to regular muscular back trouble that most of the population will have had at some time?

      I am past waiting for things to go back to 'normal'. I have found reading these boards helpful and appreciate that people living with the exhaustion of living with these sensations seem to leave in their wake can find time to share your thoughts - thankyou.

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    • Posted

      Omg I'm always amazed when I read a comment on this board that mirrors so much of what my life is now like. I too stay close to home now. Even when I attempt to walk I just go back and forth on my street out of fear that I'll soil myself or the pain will get too bad to fast to get back home. Then there's the dreadful cramping I'm almost afraid to go back to sleep sometimes for fear the muscle spasms will come back or my foot spasming as soon as I attempt to point my toes, I read on hear so often about the different kinds of pain we experience compared to a typical back problem, such as those shooting pains and cramping you describe and I keep thinking if so many of us have similar feelings WHY don't the doctors seem to get it. I've had my own family doctor say she doesn't understand my symptoms because CES doesn't cause pain it causes bowel and bladder problems. So thank you chrioli and everyone else who help me realize I'm not alone and that my symptoms are a common result.

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    • Posted

      Misty,

      You are absolutely not alone🙋. I can't believe she said that. So funny as in not ha ha but odd. Most health professionals know that ces is a spinal nerve injury not unlike an incomplete spinal cord injury which is very painful. Unfortunately what educates health professionals is exposure to patient populations. Not only is what you find in medical textbooks on Ces minimal at best but also exposure to Ces patients is minimal as well. I think most healthcare folks don't get the variety of ways ces can and does express the injury. As opposed to spinal cord injury which is more definitive. The "professional" I saw when my Ces was presenting itself, said," it's not Ces because Ces is rare, it's inflammation". Then he handed me a script for methylprednisone and sent me home and said see you next week. I would

      say lol to that but I just can't laugh about it. That's how I know I'm not coping. How do we cope?

      Thanks

      Chrioli

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    • Posted

      Thankyou to you both and to Scott & others for sharing experiences. Yes I have sat there with my doctor trying to reason out things nothing has made much sense to me / us until I have read bits and pieces from others with CES. Then I feel more empowered to talk it through with doc/s and get more support for some better quality of life. Reading from others can make the pain, pressure feelings seem more normal and yes what I have read on SCI makes more sense. I am grateful to know there are others out there with CES getting the feeling of uncertainty that their body might play various 'tricks' on any given day. I still don't know what coping looks like either but looking here helps. I find lately that some mindfulness therapy has been helping me not get so frustrated with my bodies daily 'tricks' and the fear of going out with things like tipping over when leg gives way because the nerves are 'out to lunch'. My mindfulness lady said be kind to your leg, you dont know how hard it worked to stay functioning. I found it a funny comment at the time but it has weirdly helped with my daily frustrations and fear of things going wrong when I am out. I also like your comments about 'patient exposure' effecting docs attitudes and the lack of text book information that is probably still leading to delays and people with chronic form of CES not getting help that might be needed. Thanks guys wishing everybody a mobile active day whatever that means to you.

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