Was just diagnosed with Cauda Equina yesterday

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

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!

How are you now Briwelk?

Sorry to hear of your suffering