CES IS AN EMERGENCY – ACT FAST
SEEK URGENT MEDICAL HELP IF YOU SUSPECT YOU MAY HAVE CES.
Cauda Equina Syndrome (CES) can be hard to diagnose and symptoms will vary from person to person.
There are a number of “Red Flag” symptoms which, if seen, should alert a medical professional to carry out some investigations (see our ‘Red Flags’ page).
The medical professional should take steps to determine if you have or are at risk of CES.
If you have any of the symptoms and suspect you may have CES, it is very important that you tell the medical professional your suspicion.
If you suspect CES and a doctor tells you to wait until you are incontinent,YOU MUST INSIST ON ACTION;
DO NOT WAIT UNTIL YOU ARE INCONTINENT. IT COULD BE TOO LATE.
ACT FAST
Do not wait until you have become incontinent. It will be too late. CES is treated with emergency surgery to relieve the pressure on the spinal nerves. The surgery must be performed very quickly (within 24 – 48 hours) to prevent permanent damage. Seek medical help immediately.
SPEAK UP
When discussing your symptoms with a doctor, do not feel embarrassed to talk about your private parts becoming numb, or the fact that you cannot get an erection. If you worry about this now and delay diagnosis, you could end up with a debilitating life-long condition.
BE CLEAR
Be clear about the progression of your condition. Keep a diary of the times you first noticed numbness/pain and when it felt worse/better. Note what made it feel worse or better. Set out the times of when you took medication, when you last passed water/opened bowels Do not underplay your symptoms.
ASK QUESTIONS
Ask if you are going to have an MRI scan to confirm or rule out the diagnosis. If the doctor says no, ask for an explanation. Ask the doctor if it could be CES. If the doctor advises that it is not CES, ask how they have arrived at that conclusion. If the doctor asks you to go back home when you are incontinent, know that this is too late and the doctor is wrong.
LIFE AFTER DIAGNOSIS
Life can be really tough for you and your family. If you or a family member would like to speak to a fellow sufferer, call us for a confidential chat about anything ranging from getting out and about, using a catheter, getting help with benefits, going back to work, knowing what to ask, or if you just need a shoulder to cry on. If you are reading this after you have been diagnosed and you are wondering if the doctor got it wrong, call the lawyers in our team and they may be able to help you. Click here.
Don’t suffer alone.......
Our ambassadors are past sufferers who have already gone through this difficult journey or they are volunteers who have helped sufferers. They will offer guidance and may be able answer questions such as:
- I feel alone , how do I get support and help?
- I have had surgery, but I am still suffering incontinence, is this normal?
- How can I get help with this?
- I feel so embarrassed about my problems, is there anyone I can talk to?
- How long will it take to recover?
- Will I be able to carry on working?
- I cannot work, how do I access financial help?
- How will my life change?
- How might this affect my relationship with my family/spouse?
