#cauda equina syndrome

[smoov-criminal]

happy disability pride month to those with conditions no one talks about, online or in general:

multiple sclerosis (me lol)

marfans

cerebral palsy

bells palsy

hidradenitis suppurativa

cauda equina syndrome

mixed connective tissue disorder

hyperadrenergic pots

non hypermobile eds types

stickler syndrome

mitochondrial disease

cystic fibrosis

sickle cell disease

myasthenia gravis

post-cholecystectomy syndrome

SWAN (syndromes without a name)

...just to name a few. i see you and you deserve awareness and understanding.

this list is non exhaustive, rb with other conditions you want to see represented!!

[ID: a post banner with dark red background and medium grey bolded text in the center. it reads “This post is about physical disabilities, do not derail.” On each side there is the dynamic disability icon, a gray symbol of person in manual wheelchair leaning forward with arms bent behind them mid-push. /end ID]

[plague-parade]

happy disability pride to all of my fucked up spine havers

happy disability pride to those of us who have spinal cord injuries, degenerative disc disease, ankylosing spondylitis, scoliosis, kyphosis, lordosis, spinal arthritis, cauda equina syndrome, tethered cord syndrome, spinal fusions, stenosis, myelopathy, radiculopathy, spondylolithesis, craniocervical instability, spina bifida, spinal tumors, syringomyelia, and anything else spine related

we are so very cool and i love you all so much

[fencehopping]

Learning to walk again wasn’t on my 2024 bingo card, but a lot can happen in a week.

Last Friday I woke up unable to move. I was taken by ambulance to an MRI showing a disc in my back had ruptured, compressing the nerve bundle that controls the lower half of my body. After an emergency surgery to relieve the pressure, I’ve spent the last week in rehab slowing regaining feeling, balance, and the ability to walk.

[amireallythatcomplex]

Yesterday marked one year post Cauda Equina Syndrome diagnosis, and I had lots of cuddles from my Frenchie puppy because she knew I was upset. Then I went swimming (did my physio exercises, some walking and a tiny bit of "swimming") and walked around part of Decathlon with my mum and nieces. In the afternoon I drove (driving using hand controls rather than my legs feels so natural now) to my friend's and we went to Nando's and had a great time (and I showed off my new CESCI beanie). Then I did my first solo shop at Lidl in my wheelchair (and got soaked getting it in and out of my car).

I was stared at by lots of people whilst using my wheelchair, but I'm proud to use it. Being ambuplegic isn't bad, so why should I care if people comment on me moving my legs or getting out of my chair and taking it apart to put it in my car? Yes, I can walk, but it hurts, and sometimes isn't safe (like yesterday when it was raining badly and Lidl's floors were very slippy and I could've fallen if I'd gone in there on my crutches).

Now I'm in a fair bit of pain and pretty tired after such a busy day (for me, I did 1,342 steps and 1,501 pushes, smashing both my targets). Another positive is that I've been out of the house for the first time in months without wearing incontinence pads and not worried about having an accident because my bladder is getting stronger using the flipflow valve on the catheter, and the Peristeen bowel irrigation is working.

Now just to get through all the emotions today (and the coming week) is going to throw at me since it's the anniversary of my L5/S1 decompression (the surgeon said they were only able to remove about 80% of the compression off my spinal cord) and discectomy. And the potential PTSD caused by my stay on D8 at QMC Nottingham, especially after they nearly killed me with a latex catheter despite knowing about my latex allergy!

[oseberg-shipper]

I wish I could explain to other disabled people and to doctors how exercise works for me, so that doctors could do a better job of helping people get exercise and other disabled folks could use exercise the way I have if it works for them.

Cause the way exercise has been explained and sold to me my entire life has not worked for me at all. But the way I'm exercising now really helps.

I have EDS, degenerative disc disease, spinal nerve damage from Cauda Equina Syndrome, endometriosis, and many other issues. I used to laugh at people when they told me exercise would help. All I ever did trying to exercise was hurt my body and my feelings. I got repetitive stress injuries at the drop of a hat, so as soon as I'd established any kind of routine, I'd hurt myself and be unable to exercise, and then I'd lost my groove and just felt terrible and guilty about it.

Exercise was sold to me as the least I could do to buy my right to exist as a fat cripple.

Last year, I had a lull in active health disasters, and I was worried about becoming so deconditioned that I'd catastrophically injure my back again. So I started a walking program under the guidance of my PT, who knows about EDS. She helped me get fitted with walking sticks to keep my form and give me more of a whole body exercise. She also showed me how to walk. I went to a great little medical shoe shop and got two pairs of sneakers and orthotics fitted by a butch.

I started with 15 minutes of walking, and .25 miles of walking, every other day. I didn't have to do anything else, just on the day it said, walk either 15 min or .25 miles based on what it said on my paper. Eventually, in a few months, I got up to a reliable 3 miles/1 hour walk. I saw the river in all the seasons. I felt the wind on my face and the rain and the sun. I bought exercise clothes and suited up, even for short walks, to make sure my parts all stayed where they should be.

The hardest part was not going ham. Not extending my walk, not going further and faster. The second hardest thing was getting back on the horse when a flare or injury made me take more rest. Also, the distances I was doing were actually too much. My legs hurt all the time and I had to take meds to help with the pain sometimes.

Then, this mystery stomach problem I have started. Intense epigastric pain and vomiting. I had to stop exercising because I was simply not taking in enough nutrition to be safe.

Once I got the vomiting under control, and was able to consume more calories and especially protein, I got back out there. Now, as long as I'm not desperately ill, I walk 1 mile around my neighborhood with my sticks. My back feels better while I'm walking. When I skip a day, my back hurts more. My bowels move better when I walk. Essentially, I've gotten my body physically dependent on exercise. Because that's what our bodies evolved to do, and we offloaded some things like digestion onto the assumption that we'd be moving our bodies.

I hate hate hate the way we talk about exercise in this culture, because it's denying people in pain a tool that could really help them, by wrapping it all up in this horrifying morality play.

I wish there were apps out there for folks like us, that encourage you to exercise but don't link stuff to shame or weight and don't punish you for taking time to recover or prioritize other things. Because it was really really hard to get into exercise and I had to spend a lot of time doing something I really really didn't enjoy, that stole spoons from me, before getting to a point of fitness that allowed me to actually benefit.

[gleditsia-triacanthos]

hey so if you get sciatica in both legs overnight and become suddenly incontient— that could be cauda equina syndrome! that’s incredibly serious!see a doctor!

- sincerely, someone who had full lower body function this saturday

[a-deep-purple-feeling]

UNTITLED (16"x 12", acrylic paint, oil, dried flowers on canvas board; 21.1.23)

INSTAGRAM

[angelgendered]

Don't ever x post from fb but this is an important post. Please familiarise yourself with the red flags of CES. its so important cos while it's rare it can happen to ANYONE and its terrifying, painful, and a long recovery afterward. Don't leave it days to get treated and put your continence, sex life if you have one or ability to walk in jeopardy. Go znd get seen if you have any red flags in this image

My red flags were parts of all of these categories and I still failed to notice it was ces despite knowing about the syndrome. By the time I was taken in, I had completely loss of feeling in left leg, weakness in my left leg, couldn't piss, couldn't poop, my whole butt and private area was numb and the pain in my back was the worst pain I've ever experienced. I should've by rights had an ambulance but instead I was stubborn and went in the car, and sat on a plastic chair for 8 hours before they made ne lie down when they realised what was wrong. Don't be like me lmao

[newlifeprojects]

'fáj a lába, azért.' TUDOM BASZKI, es nem is a laba, hanem vszinuleg a kurva ideget nyomja egyre jobban a gerinceben a deformalodott csigolya, szuper erzes am ezt tudni, meg hogy kb legfeljebb szinten tartani lehet, talan, es fajdalmat csokkenteni, de a problemat megoldani es az okot eliminalni nem. :(

tegnap tudatosult bennem, hogy ez a kutya oktoberben mar het eves lesz 😭 de hiszen nemreg jartuk csak ki a kutyaovit!!

[deathby-procrastination]

as someone who had to have emergency surgery for Cauda Equina syndrome caused by lifting incorrectly please do not take this as, oh this website is old. i am 25!!!

the doctors all just kept repeating that it is very rare to see this in my age group. i could've needed a permanent catheter or been paralysed, all because of how i picked something up wrong.

exercise your core, use your knees not your back, please!!

you motherfuckers better be lifting with your legs and not your back

[kennysnyder]

What Causes Cauda Equina Syndrome?

Cauda Equina Syndrome is a disorder that affects the spinal cord. It can cause difficulty walking, numbness or tingling in lower extremities, as well as difficulty in controlling bladder and bowel. The cause of cauda equina syndrome is not known, however it's believed to be related to compression or inflammation of the cauda-equina nerve which is the nerve that connects the brain and lower extremities. Treatment for this condition usually involves pain relief as well as rehabilitation therapy.  https://www.mrhsolicitors.co.uk/service/cauda-equina/

[fencehopping]

Discharge day, and I’m walking out of here. 🚶👍

[wheelingwithgrace]

Wanted to make this an educational post though !

If you have not experienced incontinence before and are all of a sudden experiencing it along with severe back pain and/or have numbness in your groin, get to the ER asap !

Especially if you have pre-existing back problems.

Not many people realize it, but these symptoms in this context could be a medical emergency and can lead to permanent nerve damage if left untreated !

It's called Cauda Equina Syndrome

Incontinence is normal and can be caused by so many different medical issues I wish people didn’t see it so extremely and it was more normalized amongst people

[amireallythatcomplex]

(Left) 15.08.24 marked 1 year since my Cauda Equina Syndrome diagnosis, ft my Cauda Equina Spinal Cord Injury beanie 💚

(Right) 16.08.24 marked 1 year since my L5/S1 decompression and discectomy at QMC in Nottingham

Küschall K-Series 2.0 chair and Ossenberg comfort grip crutches. Ambulatory wheelchair users exist! I'm #ambuplegic In other words, I'm an ambulatory partial paraplegic because of the nerve damage to my bladder, bowel and legs - I have patchy feeling in parts of my legs/feet and reduced motor function and balance, plus lots of nerve pain. The crutches are for use around the house and short distances walking; the chair is for longer distances or where walking would be dangerous e.g. I used my chair in Lidl on my diagnosis anniversary (despite it taking longer to get it in/out of my hand controlled adapted #Peugeot308 because it was raining badly and the floor was way too slippy for crutches despite me only wanting 3 things - it would've been painful and slower to walk around the shop even if the floor had been dry).

[consolecadet]

Having a weird one since I'm directly giving a character an experience I myself have had, especially given that it was a fairly upsetting one, but we're just gonna go with it

[gleditsia-triacanthos]

because i’m a listmaker and this is still insane to process, considering making this a series.

wisdom (?) from day ~3 of paraplegia

1. don’t fuck with your back. if something’s wrong with your back (or neck), tell a doctor. do not thug it out. this sentiment 10x if you have an hctd.

2. those hospital wheelchairs? the folding kind? not good for shit if you can’t walk or stand. those are point a -> point b transport and that is it. kind of knew this from my previous hospitalizations, but it’s definitely more relevant when everything but your legs are healthy and functional enough for walking (translation: i’m in bed 90% of the time now even though i feel more or less okay, it’s maddening).

3. self catheterization is not for the weak. will not elaborate on this one purely for my own privacy, but i’m absolutely not going to pretend that incontinence isn’t something i (and many other people) am contending with. hug your incontinent friends.

4. the big things start to matter more, but so do the little things. did i cry when my best friend drove two states over when i called? most definitely. did i cry at the possibility of having to replace my jeans collection with adaptive pants (we’re fine on this front, i tested it this morning. it takes forever to put on pants independently, but it’s not impossible)? yup! i’m probably learning some kind of life lesson right now, but becoming (in my case more) disabled does not make you less human, even for the better.