Had surgery for CES on 23/03/2017, started back at work Monday & nown in pain!

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so in January 2017 I was diagnosed with sciatica. Many trips to the doctors & phone calls & various antibiotics and on the 23rd March 2017 I finally saw a doctor who took me seriously (I even told her I thought I had CES). She referred me to Hospital for an MRI which confirmed I had CES & needed urgent surgery. I had surgery that night (they cut away some of the disc which the surgeon said was huge & moved it). I'm now 8 weeks post surgery & im starting with the original aches and pains that had back in January, im also getting the back spasms again and i'm experiencing odd pains in my hip. I'm terrified it's happening again!

Anyone had it happen again? How likely is it to happen again? The pains making me feel sick😢 I have my check appointment next Friday where I will have an MRI again. Any help is great!

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  • Posted

    Hi, not sure if I can be of any help as my pain didn't improve post op. In fact leg pain is significantly worse. Yours does sound very different, as you had improvement and now deterioration. I'm no expert on ces, but knowing what I know now (I was misdiagnosed which led to partial paraplegia) I would get checked out sooner than your post op appointment.

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    • Posted

      Thank you! I'm going to ring the doctors when I finished work just to be on the safe side! I hate living on the edge & worrying😩

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  • Posted

    I am so sorry for your pain and I understand. I had back to back surgeries a year ago.  My pain has gotten significantly worse (I posted my story this morning if interested). My hips are one of my most problem areas. It is my understanding that this is due to inflammation, scar tissue and nerve pain. I am trying a cuadal esi injection tomorrow. I will let you know if I get any relief. My bladder has gotten significantly worse in the last few months. I have to wear a diaper now, but I am seeing a urologist and we are hoping I can re-train through the use of catheters.  It is all so overwhelming.
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    • Posted

      Hi heathermac32,

      Sorry to hear your bladder problems but are you trying the kegels exercise? I too had a retention before but kegels help me improve a lot

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  • Posted

    I like the other person who commented never did get better but much worst than before the surgery but mine was delayed 3 weeks after taking 1.5 years to finally diagnose it with an mri. I did notice an increase in pain around that time which i believe was a result of scar tissue. My surgeon obviously failed me and wouldn't consider anything he did was wrong. I've even been to other surgeons who all say there is scar tissue and left over disc fragment but no one wants to discuss surgery because of the amount of nerves involved now being meshed in scar tissue so another surgery could likely make things worst.

    Hopefully if it is getting worst and there is a reason i hope you get the help you need. Definitely don't ignore it.

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  • Posted

    Hey fran i too was diagnosed with ces in jan i woke up with a bad back one morning which wasn't unusual every now and then for me 2 days later i had gotten to the point where i could not feel the back of my thighs and some parts of my front genitals were totally numb as well as my left calfe was numb and so was the bottom of my lefy foot and could not urinate so i thought it was time to ring the doctor and explain whats going on she had an ambulance sent round immediately i was taken for an mri and only had to wait about 30mins in a&e before i was seen i was then told that they were pulling a surgery team together and that i needed surgery tonight i was not allowed to stand and was put on a stretcher put in an ambulance the blues and twos were turned on and i was taken to a specialist spinal unit the surgery went great but there was no improvement on my nerves straight away its been 4 months now and ive nearly recovered i can urinate without a catheter now but still have no sensation i can also poo without aid but again no sensation i would say if healing keeps going the way it is i should make 100% recovery in 8-9months luckly im only 24 so i have youth on my side. I read so many stories of delayed diagnosis and its the reason people get stuck with lingering problems for years the chance of having cauda equina twice is so small you would have to be seriously unlucky but its not impossible. i have had stages of back pain in my recovery and got worried but you have to remember you have been professionally mutilated and it takes a long time to heal from that. Stay moving about and have short frequent rest do not drink or eat anything that that stimulates you CNS (caffeine, sugars) if you have back pain and spazams asky your doctor for diazapam this will really relax your muscles and let your nerves rest. The best peice of advice i can give you is go and see a professional or even 2 or 3 and dont leave untill your 100% satisfied you have been thoroughly assesed. Good luck with your future CES is a journey not just a back injury

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  • Posted

    I agree with post that says CES is not just back injury, it is a journey. Good on you for going to work are you taking it easy enough? It sounds like only a few short months since surgery for CES? Can you make strategies for worl to be gentler on lumbar region? I understand in CES healing you might be early days- I hope it is a 'flare' and not something new as you sound worried for. CES has a way of being unpredictable even if it is not a 'new' compression. For me it was numb, then tingles, then pain, which has stayed. This was over month & years post op. Pain is better than numb & no function though hey.

    Work, esp work in chairs I think is very much a possible flare trigger for CES - to sit. What do others think? Sitting is still the pits for me.

    I am 2.5 yrs post surgery, stay active a in can get about looking 'normal' but balance is hinky some days. I was Lucky enough to never fully lost bladdef function or walking, like some here but it was getting close before surgery I think.

    I'm still learning, still good days some very bad days - these days reading this forum & reading from others helps. Bad do not mean bed days for me, it can't. With CES my trick has been to keep moving and change position. It lines up with what I've read have found writings of dr Sarah Smith (arachnoiditis COFA organisation) and Dr Forrest Tennant very helpful. I have just been reading a little handbook of his ' arachnoiditis handbook for relief & recovery'.

    I'm no doctor, I'm not saying we CES survivors have arachnoiditis but these sources are the closest stuff I have found to read of doctors giving some real ideas of managing symptoms that are just a part of day to day life - esp the intractable pain. At least they define chronic CES too, which seems almost invisible in medical studies, just the acute red flags get discussed.

    I hope you get some relief & it is a CES 'flare' rather than something new. not that this is much fun! I had one last year and that clear MRI was reassuring but the flare was still the same. Now I have a 'flare' plan. Please do remember it is early days & time to be gentle with yourself. Good luck with MRI & support from docs for quality of life.

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