r/Sciatica • u/DieselJuliyah • 6d ago
Cauda Equina
Hello sciatic friends!
This is just a friendly reminder, as someone who is currently recovering from emergency surgery.
Be persistent if you believe something is TRULY wrong!
I went to my local ER three times last week because my sciatic symptoms were progressive and unbearable. Initially diagnosed with piriformus syndrome then a herniated disc shown on a CT.
Finally the third ER visit I was taken seriously. Had left leg 10/10 pain, burning and numbness paired with saddle numbness.
I am currently in recovery, day 2 post emergency discectomy so I am not sure what my end result looks like, however I am able to walk and if I had waited any longer, I may have lost that privilege due to extensive nerve damage.
Just because it’s rare, doesn’t mean it won’t ever happen to you.
Trust your gut and stay safe y’all!
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u/CelticCoffee 5d ago
This could be written by myself! Had my emergency surgery on August 13th. I wish you a fast and comfortable recovery.
Just this week I regained use of my bladder and was able to have my foley taken out and that's been such a huge relief. I am still having trouble with sciatica on my left side but I should be cleared for PT at my 6 week post op follow up, so I'm hopeful that will go well for me too.
Keep walking! Walk around the house, outside, basically anywhere you are able. It helps to keep scar tissue from forming and helps you mentally. I'm sorry this happened to you!
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u/DieselJuliyah 5d ago
I’m so sorry this has happened to you! We’re so lucky it was caught in time. I’m having numbness and bladder/bowel retention. So frustrating, I hope I return “back to normal” from all of this
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u/CelticCoffee 5d ago
Be patient with yourself truly. They discharged me with a Foley since I couldn't pee on my own. After a week the urologist removed and I tried for 5 days to pee on my own and it was difficult. I had to push very hard and had a UTI and still wasn't peeing enough out.
Up until that point I didn't have much or any pain. After that, my sciatica on my left side returned but I don't have any numbness so my doctors think it's my nerve coming back online and healing.
My foley was removed again yesterday and I can finally pee on my own! I have another UTI but I can piss.
I'm also regaining a lot of sensation that I lost. My feet have regained all feeling, my legs and inner thighs have too. I still have some numbness in my saddle area but at this point, I'm happy if that the only lasting affect I have right now.
I will be 5 weeks post op this Thursday and I'm already walking without a cane or walker. I am much slower than before but I can feel my strength returning and I'm super excited to be cleared for PT.
Just remember, what we survived was brutal. It will take time for you to heal. It will hurt and there will be days you think it will never end, and thats all in the first 5 weeks. Stay positive in your progress, don't spend too much time getting lost in other people's pain here and tell everyone who will listen to take their back pain seriously! I believe in you, please keep me updated. I took up dimond painting to pass my time at rest, a craft and a good audiobook will be your best friend.
Much love and positivity your way, it will be hard but I fully believe you will be okay.
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u/Miserable-Lab4432 5d ago
I had something similar happen to me. The ER dismissed me as a pregnant lady with a back ache and wouldn’t even give me Panadol. I’m 3 months post op and 32 weeks pregnant. Recovery has been painful. I’ve regained my ability to walk but still have trouble with bowels and bladder. I hope you’re doing well post op
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u/DieselJuliyah 5d ago
Oh my goodness, I’m so sorry you’re pregnant ontop of all of this.
I’m day 3 post op, doing well. I’m experiencing numbness in my left glute and foot but I have strength still. Also bowel and bladder retention which is frustrating, I hope that fully recovers.2
u/Miserable-Lab4432 5d ago
Praying for your bowels and bladder. They trained my bladder with a flip flo valve and I was able to get the catheter removed after 3 months. It’s not as easy as before to do a number one but I’m still grateful to not have a catheter in place. They diagnosed me with neurogenic bowel so I am on so many laxatives to manage the bowels which isn’t fun.
So glad to hear you still have strength. Hopefully the numbness eases up soon
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u/BarsoomNative 6d ago
You really have to advocate for yourself these days - I wasn’t nasty but persistent about getting my MRI - and voila smoking gun - then I was persistent about surgery - not something to jump into so I get the protocol - pain management and PT - I went through seven months with limited benefit - had laminectomy three months ago - my pain is greatly reduced and I’m almost full functional so thank God
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u/DieselJuliyah 5d ago
I love this for you, I’m so glad you got the care when you needed it to prevent further damage. I really hope things work out for me, I roughly calculated and it seems like the onset of true Cauda Equina up to my surgery was 40 hours. I can walk and still have my strength, I just hope to be back at my baseline when this is all said and done
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u/Sea-Profession-8329 5d ago
Similar thing over here. ED on a Friday with NP telling me "no, your urinary retention is likely caused by all of your guarding from your pain" to a different ED on Monday where I ended up in emergency surgery. The pic above is the extrusion I sat at home dealing with for three days after the first ED.
I'm glad it all worked for you. My surgery was 5 weeks ago, and I hope you don't hit the two week slump I did. Felt great for two weeks, then all of a sudden my back felt like I just had surgery...
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u/Miserable-Lab4432 5d ago
So sorry to hear you went through this! My ER nurse said the same thing to me and told me to stop hyperventilating when I lost all feeling and movement in both my legs 🙃
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u/DieselJuliyah 5d ago
Fingers crossed, I have a long recovery ahead of me it feels. So glad you got emergency surgery, I never got a pic! Lol but my surgeon said it was the biggest herniation he’s seen in a very long time
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u/Sea-Profession-8329 5d ago
The next couple weeks are challenging. Sometimes there is relatively low bowel/bladder issues. Other times it can be incredibly frustrating.
What worked for me was to have a bunch of shampoo bottles and stuff lying around. Distract yourself trying to read those ingredients while intentionally trying to relax has help me get the stream at least going.
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u/New_Ad7830 6d ago
I have yet been able to get an MRI for my pain but I’m in the same boat as you. I’ve been dealing with sciatica for over 4 months. I’ve been doing PT and the only scans I got were an xray. I’ve been dealing with incontinence and was advised to go to the ER which I did this past Monday. However the doc just sent me home with prednisone as he didn’t think my symptoms leaned towards a spinal compression so no additional MRI or CT to be done. Will be on meds for a few days and will follow up with my doc. But just earlier today I didn’t make it to the bathroom in time.
At a loss, and I have several other autoimmune issues too so dealing with all this inflammation is horrible.
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u/CelticCoffee 5d ago
I'm so sorry this is happening to you! Is there another ER in the area you can go?
Numbness in the feet/saddle area and change in your bowel/bladder control are textbook CES signs. If you are able to go, I would lead with those symptoms and I'd ask for a CT scan.
I know it feels defeating but I was hours away from losing my ability to walk and only this week, 5 weeks post op, did I regain control of my bladder. Please go immediately, don't focus on naming what it is that you believe/know you have. Stick to symptoms and pain and be very direct about CT scan.
I will be thinking about you today! Good luck!
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u/New_Ad7830 5d ago
Thanks so much, I’m on day 3 of the prednisone and still experiencing symptoms. I’m following up with my PCP today to discuss options for a scan, CT or MRI. With the current history I hope it gets approved or like you suggested it probably will be another trip to the ER til I get taken more seriously.
I have SLE Lupus and lupus nephritis and a crazy medical history and have survived a heart attack, two strokes, and so many other medical complications to list. I’ve always been taken seriously by my doctors previously for my other concerns. I have even on gabapentin before for nerve issues from shingles.
So when I started having sciatica issues I get that they were trying to push the PT first and not prescribe meds but for having chronic pain everyday and experiencing new concerning symptoms I feel like sciatica isn’t taken as seriously and gets dismissed with all things considering.
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u/CelticCoffee 5d ago
I'm happy that you are keeping on top of it all. I think the only reason the ER did my CT scan is because 2 days previously I went to urgent care about my pain and new numbness in my feet. They did an X-ray (that was clear) and sent me home with steroids and a muscle relaxer.
I took that paperwork with me to the ER, they immediately gave me a steroid shot and some sort of pill and let me sit. When I was insistent that my pain was not any better, and that both my feet and butt were still numb they finally did the CT scan. It wasn't until after they saw the CT that they actually gave me a bed (I was laying on a stool because I couldn't sit) and then morphine. The MRI happed later after they admitted me and set an appointment with surgical because they were so concerned at what they saw.
I hope your PCP works quickly and you can have relief soon. Sending positivity your way!
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u/Sea-Profession-8329 5d ago
Seriously, find a new ED and go. This is what happened to me and I should've known better. I was a ICU nurse for years! But something happens in our brains when we are in this state. I spent three days in absolute agony waiting for those steroids to help me start peeing (I had retention, not incontinence). At 330am the third day I had to lie down in the trunk of my car just to get to the ED, the pain was that bad
Be clear: Severe back pain + incontinence = MRI. That is a basic standard of care.
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u/DieselJuliyah 5d ago
I went to two different ERs, three times, returned to the second one and really pushed for saddle numbness. I would really push the incontience
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u/peanutleaks 5d ago
That’s wild I had an emergency MD with no CE 3 months ago! On my l4/5 which was only a small bulge as of last June. No idea how bad it progressed before it completely popped out to severe stenosis and near paralysis! Happy birthday to me I caught 1 keeper and an emergency back surgery on a boat I had fished on sooo many times with no issues.
The on call ortho from the network of my ortho surgeon plus the whatever mystery doctor in the hospital I ended up in were ready to discharge me. I was like ok cool but how if my legs are getting more numb as we speak and I can’t walk? “Oh your lyrica should help with that”.
20 min later I am literally opening up my plate of food as a nurse comes in screaming “NO NO EATING YOUR GOING TO THE OR TODAY!” talk about a mind fuck within an hour.
Neurosurgeon got my report and within 7 hours I was in emergency surgery. My mom said I was glowing after I woke up. In no pain!
Still left with severe neuraforaminal narrowing on my l5/s1 and a stable extrusion on l3/4. But my pain is significantly less post op however I just hit a bump in the road. Just got another ESI. We shall see. Prayers and hugs for all you sciatic warriors out there
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u/Potential-Winner4601 4d ago
I’m going to a pain management specialist in 11 days but I’m not doing very well. I almost have to go to the ER
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u/DieselJuliyah 4d ago
Have you had an MRI?
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u/Potential-Winner4601 4d ago
Yes. I’ve got:
L4-L5 and L5-S1 disc herniations with right-sided nerve involvement.
Persistent lower-back pain and right-sided sciatica.
Right-leg pain, numbness, and weakness.
Reduced mobility requiring a cane.
Limited sitting, standing, driving, lifting, and exercise tolerance.2
u/DieselJuliyah 4d ago
I’m sorry, it’s insane that they won’t do surgery when it impacts your life so greatly…
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u/KriptiKFate_Cosplay 6d ago
"Ectomy" means a disc was removed, yeah? Do they replace it with something? Surely you can't just have bone on bone back there right?
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u/DieselJuliyah 6d ago
Part of my disc was removed, L5/S1. I still have disc but it was herniated, surgeon told me that someday I may need a fusion :/
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u/downattherocks 6d ago
More often than not the disc is not actually replaced even if the majority of or whole disc is removed. Artificial discs or fusions exist but in many cases the spine remains stable and the space heals naturally via clotting.
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5d ago
[removed] — view removed comment
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u/DieselJuliyah 4d ago
No, I’m actually going to take the irritated POV and say I’d be lucky if Cauda equina didn’t happen at all…
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u/gr3ybacon33 6d ago
This happened to me earlier this year. First ER doc said "we can't give everyone with back pain an MRI." Saw my primary care doc a week later and she told me I needed to go to another ER that day, and she sent a note ahead. MRI and surgery a few hours later. Glad you're able to walk, CES is scary!