CAUDA EQUINA SYNDROME ASSOCIATION

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just to let everyone know I am a CES sufferer and have set up this organisation to support sufferers and their families. We are striving to increase awareness to enable earlier diagnosis and treatment thus preventing permanent neurological injury. please feel free to contact me.

Emis moderator comment: I have removed the email address as we do not post these. If anyone wishes to contact Claire please use the private message facility.

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  • Posted

    Hi , my name is Rose and i suffer from Cauda Equina Syndrome , could you read my blog/story and questions please , if you have any information regarding my blog/story I would be greatfull , many thanks

    If need be I can directly tell you what I have posted , let me know please

    Thank you , Rose

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  • Posted

    They are thinking I have CES. Everything I read about it states that it is urgent. But all the waiting time to get all the testing done is sure not urgent. How long do you have before it becomes permanent? Please let me know if there is any thing I can do to hurry this along. Thank you. .CHusmann

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    • Posted

      This is a question for your doctor, like, immediately!

      I went from CESI to CESR under the surgeons nose. CESI can be tricky because each case is slightly different. But now I have urinary retention and hydronephrosis in my right kidney. Don't let them wait. Be a squeaky wheel and get answers to your questions ASAP.

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  • Posted

    If you have ces from a herniated disc that is compressing the cauda equina nerves then it should be decompressed within 48 hrs but ideally it is better done earlier with first 24. If they suspect it you should of had am emergency mri scan to try and establish diagnosis and the straight in for op. I hope you have been treated by now - I am sorry for my late reply I have been away - best of luck
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  • Posted

    I already had an MRI, have bulging dics and severe degenerative disc disease and other issues, but Dr. said nothing that is pinching spinal cord, It is open all the way down. He said what ever it is would be below what the MRI showed, and to go get CT scan and test at urologist. Waiting for appt. for all this is not very fast at all, worried that I will have permanent damage. Charleyne

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