Chronic foot pain from CES

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In August 2017 I had emergency surgery for a herniated disc that impinged on the L3 region of my spinal cord resulting in Cauda Equina Syndrome (CES). Almost two years later my recovery has been, for the most part, pretty good. I went from total paralysis of my lower body before and for two weeks after surgery, to two months with a walker, another month with walking sticks and then no supports. I had about five months of back spasms and pain from December 2017 to late April 2018, but now my back is okay. I am left with numbness and weakness on my lower left side, while my right side has healed almost completely.

However, since last November I have been dealing with chronic foot pain in my left foot, which is the side that is still most affected by the CES. The pain started when I began walking more to try and burn off steam and sleep better. The pain started on the front of my ankle, where the foot meets the leg, but over time I have also been getting a strange "full" sensation and pressure on the mid-top of my left foot, as well as a tugging sensation between my toes (as if the tendons are being pulled back), and sometimes a feeling like something is gripping hard around the ankles on my left foot and also a burning sensation in my outer and front shins on my left leg. All of this is at times quite painful and possible because of the CES nerve damage, kind of tingly feeling.

This isn't what I would call spasticity, though it does feel like the muscles and tendons are tight and won't turn off.

I bought new orthotics and newer support shoes back in December, have seen physiotherapists for the last five months and had two XRays and I've just seen and ankle and foot specialist. The XRays showed mild osteoarthritis in the big toe (I'm 57, so not surprised), but no fractures or bone spurs. The physiotherapists and specialist haven't really provided a clear diagnosis or workable treatment the pain (just continue doing physio...lol) and none of the health professionals seem to understand or want to take into account that CES is contributing to the pain.

It's frustrating. Has anyone else experienced similar foot pain. Any treatment that worked?

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  • Posted

    Hi Mark,

    Sounds like you have made some amazing mile stones in your recovery! I to have suffered from CES like yourself iv made a good recovery, but too was left with numbness in my right side. Im currently 6 months pregnant, and have been having strange foot pain, I under your frustrations as no one seems to know if my new foot pain is related to my CES... the doc doesnt seem concerned and I feel that this has been fobbed of as normal pregnancy stuff (I have had 2 other children prior to CES and never got nerve pain in my feet). I havent found a solution however so far I have found that massage, rest and elevation helps mine. Hope you have some luck getting some results!

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  • Posted

    hi mark1225

    your problems sound very similar to mine; my right side has made a full recovery and the left side appears to have lots of damage.

    my spinal consultant and pain management professor both agree that my pain is being caused by neuropathic damage since the ces diagnosis in 2016. as you describe, i have the terrible burning sensation from the hip area down to my toes.

    a combination of medication and a spinal cord stimulator have helped somewhat but i still have many 'bad' days and nights (which are always worse). my pain has been reduced from 9/10 to about 5/10.

    i do worry that i am taking a large mixture of meds (zomorph, pregabalin, duloxetine, diazepam) to control this, but have never found another way to cope or function with such i high level of pain.

    the spinal cord stimulator involved day case surgery which has allowed me to reduce the doses of my meds, however, i have been unable to come off them completely.

    my doctors have all been very sympathetic to my plight and it must be hard for you when you find yours are not. have you been referred to a specialist for pain? if not i would strongly recommend this as i have found them invaluable. good luck, i hope you can find something that works for you!

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  • Posted

    hello Mark,

    your recovery is amazing! your symptoms are totally related to the CES, you should follow up with neurologist. I've had foot numbness, ankle weakness and calf tightness since my surgery 3 yrs ago. it's gets really painful if I'm on my feet for longer than 40min. I took gabapentin and also tried Lyrica but neither helped with pain. I've seen a pain management Dr but short of suggesting a nerve block, nothing has helped, so I've learned my limitations and go with the flow. good luck with your pain, I wish you the best. keep you chin up, there are those that can't walk at all. we've had a glimpse of that when it all started right? all the best, cheers!

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  • Posted

    Hi Mark well done on how far you have come its no easy journey. I too was diagnosed with CES in 2014. Unlike you my CES only started after surgery when i developed a clot on the site of surgery L4 L5 that wasnt picked up on time. It took me 6 months to learn to walk again. But like you went from walking frame to crutches to now only having to use walking sticks if I do long walks. I still have complete numbness from my waist down saddle area and both legs. I self catherize and after along process of trying different methods for bowel management have settled on coffee enemas every morning. It works for me 😃 12 months ago I stopped all medication without telling my Dr, they weren't working and the Dr's answer was to keep increasing the medication, which affected my memory, mental health and emotional state. I figured if I was going to be in pain anyway with them I'd prefer to have my memory and a clear head. It wasnt easy coming off medication and probably should have weaned myself off instead of cold turkey but after about 6 weeks I got to a place I felt somewhat normal again and no like a zombie. I now only take Kapake on really bad days for pain as they have the ability to knock me out and bring me to a pain leave I can cope with. I have found Together Magnesium 2 at night has really helped me with nerve pain and that horrible burning sensation you get down both legs, feet and also up through your back passage I also take vitamin B12. I can still have some bad days but for most part Im defiantly in a better head space without all the other medications. I wish you well on you continued road to recovery.

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  • Posted

    Wow, I'm impressed by your recovery. I had a gradual onset with a sudden loss of lower mobility that lead to emergency surgery 12/27/18. I guess when the docs say everyone is different, they're right. I have pretty much full control of bowel & bladder. After 3 months therapy (after leaving NICU ) I have complete sensation in legs and feet, but my mobility is limited so far to being able to lift/move my legs and feet while sitting or in bed. I can do sit to stand, but can't support my weight as yet. I have had foot pain, especially my right foot, which was affected most by T10 ruptured disc, cause of the CES. I also have burning bladder groin pain r/t nerve pain. The pain seems to be lessened for me by increasing the Gabapentin dosage - I refused taking it earlier due to sleepiness and fatigue. Live and learn.. I also did a bit of research on taking acetominophen, something else they wanted me to take. I'm now taking the Gaba.., Acetominophen, and Ibuprofen together 3 times daily. Apparently, taking Ibuprofen & acetaminophen together is synergestic if your stomach can deal with the ibuprofen. Another live & learn thing. The combo has really helped me, especially the burning stuff and foot pain. I'm still taking Tezanadine for leg spasms at night and some other heavy duty pain meds when my lower back goes into cramping from spasms. As I wad taking something for sleep before all of this started, I'm taking that as well. I get 6 hrs sleep, max. Hope this helps someone.

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