Was just diagnosed with Cauda Equina yesterday

Brain and nerves
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hi all,
27 year old female here in the states. I’ve had back issues for about 6 years now. and around August, I decided to go to an orthopedic specialist to get some real answers instead of continuing to go to a Chiropractor. I had severe sciatica, pins and needles, occasional numbness in legs, intense back pain. I’m a chef so I put a lot of wear and tear on my back and legs anyway. I went through multiple tests to be able to get an MRI in October where they revealed I had 3 herniated discs (l4,l5,s1) l5 s1 being super serious and very herniated. I tried my luck with an epidural injection- no help at all. That was a couple weeks ago. and then scheduled surgery for a discectomy. Monday- I realized I had saddle numbness on my left side. i was concerned so I called and they said that’s just a symptom of my herniations. On tuesday of this week, I had a hard day at work but I was fine until bed. A little sore, nothing crazy. I woke up at 3 am in INTENSE pain through my left leg and low back. I tried to get to the bathroom and when I got there the pain was so intense and all of a sudden my whole left leg went completely numb. I was screaming and crying and my wife came to get me to go to the hospital. I was in the ER for a few hours before another MRI was done. they sent the results to my surgeon and at that point he said nothing about cauda equina and that surgery wouldnt be moved up. My regular doctor admitted me for the night on the hospital and told my surgeon to talk to me. I dont know what happened between- but then he came and said I would be getting surgery Friday or Saturday (still wednesday night at this point) then came the next day and said he really tried for friday but they didnt have room that night and he had a 15 hour surgery case. So Saturday morning it is. I still have only about 50 percent feeling in my left leg if that. They fed me a lot of steroids in the hospital. I still have saddle numbness on left side. butt and thigh completely numb and groin is about 70 percent numb on left side. I still seem to have full bladder control. I just passed a bowel movement and urination. from what I read that is a good sign.

I’m very nervous about surgery and recovery. I’m afraid of permanent damage and I’m afraid I’ll have to stop being a chef. I’m afraid of being a burden to my wife. this is so scary. 24 hours til surgery.

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Be sure your surgery team will use an electronic device to monitor your nerves so that they can minimize cutting or damaging the nerves around the disc any further. Yes, it is a good sign that you have full control as that is one of the most life changing problems in cauda equina syndrome. But even that can get better as nerves do regrow to some extent. With some luck and having a skilled, experienced surgeon you will probably get through this OK but it will take months to heal. Your nerves have been bruised but they should recover. Best of Luck !!

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Hi, I am very sorry to hear of your diagnosis and current condition. I have a similar issue and can have had an L5-S1 Discectomy in August 2017. My surgery was successful, I wont lie to you, when I woke from surgery, I was in so much pain, I cried straight away. This lasted 24-48 hours and then it started wearing off. Whilst my surgery was successful I have produced a lot of scar tissue now and this now surrounds my nerve roots. I am now waiting for insertion of a Spinal Cord Stimulator.
Do you have any questions I can maybe help with? Wishing you a speedy recovery x

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I guess I’m just nervous on what in going to be able to do! I’m a chef and I dont know how long it’s going to take for my numbness to go away. I sure cant work without being able to feel my leg. as far as pain, I expected after surgery to have a good amount. but I’ve been living with pain for months so I’m not too worried. How long did it take for you to be able to comfortably walk? did you have to sleep sitting up or laying down after surgery? just any random bits of info could help!

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Bless you,I understand your concern. I cant answer the numbness questions as mine continued due to the scar tissue. The advised me to take 2 weeks off work after the surgery and i wasnt allowed to be on my own for the first week. Once the initial 48 hours are over i was pottering around. 12 days after my back op i got appendicitis and had an appendectomy and i was due to start my physio (for my back) after two weeks, i couldnt because of my appendix and the recovery for that is much longer than the back surgery! Not being able to have my physio for 6 weeks hindered my recovery a lot. I got given a grabber which was very helpful as it was difficult to stretch. I also got given a shoe horn. I dont recall sleeping being a problem because i was on a lot of drugs anyway and i think just knackered from the pain, you know what thats like! I wasn’t allowed to drive either until i felt that i could comfortably drive. I hope that helps somewhat, let me know if you have any other questions x

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Hello,

Sorry to hear you have found out about the world of CeS. Great to hear you have had imagry and are in a hospital getting surgery.

I would advise getting hold of any imagery/ documents that clearly state you have or have suspected CES. Also the records from those that ignored your symptoms. For your own records and if legal stuff ever came up later- there is an experienced poster that was on this forum with experience around this aspect of CES.

Good luck with your surgery and immediate recovery. Athough it is not the same condition the best information I have found on the internet about living with Cauda Equina symptoms to date is published by an esteemed American Doctor Forest Tennant on Arachnoiditis, specifically to public service free publication 'Arachnoitidis handbook ’ . A seperate condition , however it gives information on the Cauda Equina area and makes the distinction of living with a nerve disease or healing process than a bad back. For myself I have both CeS ( Am several veras post surgery and one of the ‘lucky ones’ , in that I did not lose ability to walk or much bladder function.

I also have arachnoiditis - possibly from epidural . But the handbook was relavant to my trial and error things I found living with what I was left with after CeS.

The things I found by trial and error - spinal bracing, contraindicated when rehabilitating a regular back. Essential for protecting nerves while healing and when driving // in crowds - done with advice my physio. Heat Pad (electric) , or in hospital warm heat packs from nurses. I have constant use a mini tens
tens machine (immediate pain relief blocks pain signals) , lots of movies to watch to I am distracted when having a Ces and / or arachnoiditis flare not getting more than 2 hours sleep at a stretch . Mindfulness technique (with therapist) so I can deal with 24/7 pain and be a ‘functional’ human being. An empathetic general practitioner doctor to listen and believe anything that is going on, not try and tell me about a ‘rare’ condition they don’t understand . Help find the right medication mix so I can safely drive and then get a few hours sleep at night laid flat on back. I could go on.. I have a life and am grateful I can drive, walk (short distances) work in a job from home. It is very different from life before and I cant sit or stand long. I never fully lost the ability to walk . I am so blessed and grateful of this.

I hear in your post you sound like you love your work (and income). Please try not to think about it, or go back before time. If you can imagine, how you heal in coming weeks, months is your window to the quality of life for the rest of your life. I wish I could tell my post surgery self that…I went straight back to work and go into what ifs about that choice still.

You are early days and people and can make full recovery from this.

I didn’t but I am still alive and living the best life I can. Remember, nerves are said to take 2 years to heal this 2 years is the point you might know what CeS has taken and what your new body can and can’t do. What your new life looks like. I Posted here years ago, wanting to know how it would be myself and can really relate to how your feeling.

My friend, you are down the CeS rabbit hole. I truly hope you make a full recovery and your journey that has begun with CeS has that end.

Either way we must all keep moving forward in our bodies the best we can. Not moving is the enemy and not an option. One good thing with CeS is that if we are walking (or well hobbling) along, pooping and able to have sex , the glass is always more than half full.

Please look out for those needles to the back and the risk of arachnoiditis or if you go on to have further surgeries. An alternative definition of arachnoitis is ‘chronic cauda equida’. There seems to be a lack of information out there for recovery CeS.

Best of luck with your surgery and recovery!

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The moderator may remove this until I contact them. It is a link to the public service / free handbook

http://arachnoiditishope.com/pages/wp-content/uploads/2016/11/arachnoiditis-handbook.pdf

Also information to be found at ‘ARACHNOIDITIS HOPE’ Websit.

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How are you now Briwelk?
Sorry to hear of your suffering