Post Cauda Equina Syndrome Tips and Advice


Pain Management

Ask your Doctor to refer you to a Pain Management Clinic, they really know their stuff. I have Amantadine Infusions every 6 months which really helps manage the erratic nerve damage. Also I have been prescribed Ketamine – yes the horse tranquiliser! – which lets me get my beauty sleep when the pain is tear inducing and too much to bear.


It has been around for centuries and can really help.

I found a kind and experienced man, Robin Croley through Pop in your post code and you will find what you are looking for.


Take all that the NHS has to offer, particularly in the early days. The more you move around the quicker you will regain tone in your withered leg, and the more weight you can distribute onto it.

Top it up, if you can afford it, with private physio and soft tissue massage. It really will help.

It has been nearly five years now, but I am continually seeing improvement. I still aim to be wearing high heels and dancing on a table again some day.

Personal Trainer

I know you will say you can’t afford it, but this has really worked for me. I think I might still be in a wheel chair if it had not been for the Support and encouragement of Sam Allen. Thanks Sam.

I now belong to the Nuffield Health Gym in Chesterfield. A big thank you to Elise Bradley-Smith for her current help, support and patience.

Soft Tissue Therapy

Ben Swain has supported and encouraged me. I am very lucky as I have had an ex Olympic athlete working with me, but I am sure you will find someone local to you who will ease your pain and limber you up.

Gnarled Toes

When I was painting my toe nails recently I could see that the those on my paralysed foot have been curling round more and more. I noticed also that a “bunion” was starting to emerge on the knuckle of my big toe. This was ghastly!

In my desire to retain what had been rather pretty feet, I decided to bind my big toe straight. This has had an amazingly positive consequence. As I have forced my big toe to be straight, the rest have followed suit. Not only that but they are splaying out and I can actually feel my body being forced to use my other toes and sharing the weight distribution. Feel is an odd word as I can’t feel the toes touch the ground, more it is a sense that they are. I can “feel” the muscles moving. This is quite a break through as it is starting to make my limp less obvious – I am so delighted!

All this from wanting to have pretty toes. If your feet are starting to gnarl, please do try it. I used Micro pore tape as it was handy. Sticking plaster would do. The toes remain straight even when I remove the binding, but I am going to keep doing it every now and again to retain the shape.

Update on that, your toes will curl again if you stop binding after a couple of weeks! Bind them before your holiday. I now use stretch fabric sticky strapping. You can get it i different shades so can match your kin tone and won’t show with sandels.

Beauty Treatments.

Yes, really.

They will make you feel better about yourself. There are some wonderful people who will come to your house and make you feel human again. Don’t laugh, you need a little indulgence, you deserve it.

Time for you

Eloise and I spent 5 nights at Chamney’s recently. This is far more reasonable than I thought it would be. Spending time working out, swimming and relaxing was good for both mind and body. They are fully equipped with abled and disabled facilities so you an feel just like everyone else. Amazingly I can swim still and it is my best exercise. I can even join in with Aqua Fit classes as it doesn’t matter if I fall over when I am in the water! It is actually great fun and the closest I get to dancing.

The dreaded D word

It is also a good idea to think about what you eat. Sudden inactivity can pile on the pounds. I was concentrating on trying to walk so didn’t give much thought to it for a long time. I now try to eat “clean” low carb and good fats. I can’t say that I drink “clean” but my alcohol intake has gone down and I feel better for it.

I have a couple of Pinterest Boards Face Facts and Low Carb Recipe Ideas where you can find some of the exercises I use regularly and the delicious diet I follow.   If you have never had roasted garlic or butternut squash chips you should check it out.

If you want to ask me any questions, please do! I would love to share my experience and help anyone who is going through this.


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