I was tested for Ces but the doctor has ruled it out

I would suggest to persevere and insist. I made the mistake of listening to them suggest I had CES, after severe pain in buttocks, legs, genital numbness, urinary and bowel retention. Additional pin testing and reaction testing and very low back pain and I was sent home 3 times with a 6-8 week appointment for an MRI. I was also unfortunate to attend A&E at the weekend. After a visit to my doctor she did same tests, insisted A&E specialist see me. In short, attended, tested and admitted with (as following day proved through MRI) CES. Was then an emergency situation and operated. It has been very soon since operation and improving well each day. Tears and anger sometimes kicks in but I will find my strength again. If they put the words to you and test you and you don't feel comfortable with your prognosis, please ask for a second opinion, an MRI and proof. Don't allow yourself to be sent home with just pain relief. 

I have thought a great deal about how to help people who feel instinctively that the doctors/ other health professionals they have seen are not listening to them or not making the right professional decisions.

My comments should be read as being strictly specific to the condition of CES (including people who suspect they might have or be developing CES), but the basic idea could easily be adapted to many medical/surgical conditions.

1.   Get yourself scanned - MRI Scan of Lumbo-sacral spine.

2.   Pay another few pounds on top of the fee for the scan to be put on a CD and given to you. It’s now your property. You should make sure that together with the scan images you are given the Radiologist’s report on the scan. Don’t pay for anything until you are sure you will be given the report as well as the images. 

3.   Pay for an assessment/consultation by a Neurosurgeon who includes operating for CES within his sphere of expertise. Get this in writing before you see him/her. Ask for the consultation urgently if you need it. Bring your MRI scan on the CD, for your Neurosurgeon to examine.

4.   Make sure that the Neurosurgeon will write to your GP (copying you in) with his opinion/conclusion in respect of CES. It would be normal practice at least to write to your GP, but just make sure.

5.   Now, armed with the images and the surgeon’s opinion, decide what you want to do next. Oh and by the way, pay a few pounds and sign for a copy of all your GP records to be released,

If these steps are followed, it is still possible that you won’t get an operation for CES even though you need one, but you have made it very much less likely, and if caught in this scenario then you should seek a second opinion immediately.

I know, you don’t think you should have to pay. I agree. But the choice is to spend a little under £1,000 to get pretty quickly to a definitive answer about whether or not your cauda equina nerves are being compressed within the spinal canal (most of the time you should get the right answer, I mean);  OR, alternatively, gamble with your future and feel sorry afterwards for many years, that you gambled and lost.

I know, you can’t see how to get referred for the scan in the first place.

Well, there are scanning units whose Radiologists will accept direct self-referral.

Failing this, ask your GP to write a brief referral letter. If he/she has advised that you don’t need this, ask him/her to record in the records that he had advised against a scan but that you would still like a scan.

(There may of course be some situations in which you cannot have a scan for medical reasons but let’s keep it simple here.)

Finally, yours truly has no conflicts of interest. The advice given is (we humbly suggest) priceless; however it is not claimed that taking this advice can cure in all cases, or can avoid disaster or a disappointing outcome in all cases: but it gives you a much better chance.

Oh, one more thing for the minority who followed the above advice but still ended up with a Neurosurgeon who failed to offer appropriate intervention or failed to deliver it quickly enough.;

Well, now you really DO have a problem. There is an answer, but I guess I will save it for another time.

And for those of you who are unfortunate enough to be deteriorating quickly as the hours, or one or two days, pass;  you really do have a problem too.  But again there is an answer. Just don’t deteriorate over a weekend, that would be stacking the odds against you.  We do not have a health system, whether NHS or private, that guarantees the same standards and availability of care at unsocial hours as compared with 9 to 5, Monday to Friday. And we have hospitals where you can be scanned 9 to 5 but not at other times. We also have centralisation of services for the treatment of CES, where the hospital you attend as an emergency has a surgeon on duty, but not one who is going to operate for CES, so a lot of time can be wasted in transferring you to the specialist centre. Think about this if you can while you are almost screaming in pain and so glad to see that ambulance crew arrive.

I hope this piece inspires you to see what you can do, while there is still time.

I was told by my neurosurgeon the day of my surgery I was almost paralyzed because of how long I waited because after 3 er visits kept being told that it was just siatica and I was constipated because of the meds they were giving me... Whole time it was the cauda equina making me unable to go. Only thing is... I didn't get an MRI even after I begged... Till the day of surgery. Doctor's are a******s... Keep trying till they figure it out!!!!

Moderator comment: I have edited this post due to the swearing. These are open forums so as per the T&Cs please do not use offensive language in posts otherwise they may be deleted.