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Cauda equina syndrome

Feb 01, 2018 1:34 PM

My name is Aimee, I’m 24 and suffer with spinal issues .. was
wondering if anyone else has experienced the spinal condition cadua equina syndrome ? If so please get in touch .. struggling to find anyone real to talk to who also suffers from this :)

Feb 01, 2018 6:06 PM

Welcome to the community aimeee. I don't have Cauda Equina Syndrome, but I do have other spinal conditions including herniated discs, spinal stenosis, tethered spinal cord, and degenerative disc disease.

Feb 01, 2018 8:46 PM

Thanks for getting back :) It’s my first time using forums.

Sorry to hear about your conditions sounds like you have a lot going on. How do you manage day to day if you don’t mind me asking ?

I’ve also got degenerative disc deasease as well as the CES. I was first diagnosed back in 2013 when i was 21 and had decompression surgery L5 S1. Since then I’ve had a spinal fusion, nerve root injections and other procedures to try and enable me to walk better.

They had me on so much opate medication for the past three years it feels like I’ve been on pause ! I ditched most of it recently to do alternate therapies such as acupuncture. I find it helps me to relax a lot and doesn’t have the nasty side affects of the meds.

However as much as I remain positive, the pain is still chronic and affects me every day.

Is there anything that you do to relieve your pain ?


Feb 01, 2018 10:43 PM

Right now the only thing that I can do to get some relief is taking Tylenol 2 with Codeine or using a heating pad.

I am considering surgery for the herniated discs which cause back pain, shooting pain into my legs, and numbness on my inner thighs/groin area.

Feb 02, 2018 8:56 AM

I have unsuccessfully tried ice packs, TENS machine, stretching, regular Advil and Tylenol.

Feb 05, 2018 4:14 PM

Heat does seem to work temporarily !

The surgery I’ve had done on my spine has really enabled me to have a better quality of life. It hasn’t got rid of the shooting pains and still have times where I feel as though I’m walking with one leg. With that said though everyone is different I guess, but I would definitely recommend giving it a go to anyone. Since having the ops there’s a lot of things I’m more able to do now that I couldn’t before such as swimming etc.

Good luck with everything, hope you can find some relief to your pain 💜🌸

Feb 08, 2018 10:47 AM

I don’t have CES but I am a quadriplegic C3 C5-7

Feb 20, 2018 11:45 PM

Ok, I haven't been on here much lately. But I have Tarlov Cyst Disease. Cysts on the nerve roots. The symptoms are much the same. I hope both you have looked at any MRI'S yourself and read your reports. They could be termed any number of names. Most doctor will ignore them and never mention them or tell you they cause no symptoms. But they cause burning rocks along the tailbone area, all sorts of nerve symptoms down the legs, bladder, bowel, GYN issues. When they become active your life drops to less than 50% functioning. Doctors have been known to do all sorts of procedures that cause more harm to those with the Cysts. There had been a correlation of Tarlov'ers with CD and EDs.

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