hello everyone
I’m now 7 months post emergency decompression op ( microdiscecomy / laminectomy L4 L5) for sudden onset CES and I’m told I’m doing well.
Bladder & bowel seem to be recovering ok and my backs not in pain ( huge relief and surprising as the A&E dept took 80 + hrs to get me to surgery despite arriving with classic red flag symptoms).
My legs and feet are my main issue now as I have severe foot drop both L & R and my gluteus, calf and other leg muscles remain very weak even after months of excercises and Physio,
walking and swimming.
Self employed and being unable to walk means I can’t work. So there’s additional stress there.
I’d really like to hear from others as to what’s worked for you in aiding recovery.
What specific physio excercises helped your legs and feet recover ?
Does anyone know of any vitamin therapy that helps nerve growth ?
Any other therapies ( acupuncture / massage ) that have helped ?
Is it possible to make a full recovery from CES ?
Thanks very much
ed
50 year old Uk male with family to support
I don't know any vitamins that will aid with nerve growth. If you find out please tell me. I think only time will help. It has been 3 yrs since my surgery and I have recovered very well. I have foot drop in my left foot. But, i have a brace that was casted out of some type of plastic and it allows me to walk normal at a fast pace. I tried other braces and i didnt like them. I stongly recommend "the hanger clinic" for a casted brace that goes from the calf down and under the foot.
Good to hear. I’d much prefer to have my bladder and bowel working instead of my feet. It seems walking is the easiest of everything else to achieve. But if I can’t take a dump or pee normally, then that just messes up so many other things for me.
I had had my surgery mid July this year. I focused all efforts while at rehab, on walking. I made good progress. But the areas I wanted improvement on had none.
im actually looking to sue the neurosurgeon that worked on me. Don’t know how he managed to screw up my arms during the surgery.
Nerve damage takes a long time to regrow and repair. Some of it may never regrow. But don't give up! Keep exercising daily and try to stay active. Your body will take the cues from exercise and try it's best to repair itself. Months from now you will notice things are getting better.
Here is a recent article describing how spinal nerves may be able to regrow, with help, in the future. It is working in mice!
Transected axons fail to regrow across anatomically complete spinal cord injuries (SCI) in adults. Diverse molecules can partially facilitate or attenuate axon growth during development or after injury, but efficient reversal of this regrowth failure remains elusive. Here we show that three factors that are essential for axon growth during development but are attenuated or lacking in adults - (i) neuron intrinsic growth capacity, (ii) growth-supportive substrate and (iii) chemoattraction - are all individually required and, in combination, are sufficient to stimulate robust axon regrowth across anatomically complete SCI lesions in adult rodents.We reactivated the growth capacity of mature descending propriospinal neurons with osteopontin, insulin-like growth factor 1 and ciliary-derived neurotrophic factor before SCI; induced growth-supportive substrates with fibroblast growth factor 2 and epidermal growth factor; and chemoattracted propriospinal axons with glial-derived neurotrophic factor delivered via spatially and temporally controlled release from biomaterial depots, placed sequentially after SCI. We show in both mice and rats that providing these three mechanisms in combination, but not individually, stimulated robust propriospinal axon regrowth through astrocyte scar borders and across lesion cores of non-neural tissue that was over 100-fold greater than controls. Stimulated, supported and chemoattracted propriospinal axons regrew a full spinal segment beyond lesion centres, passed well into spared neural tissue, formed terminal-like contacts exhibiting synaptic markers and conveyed a significant return of electrophysiological conduction capacity across lesions. From:
https://www.uclahealth.org/new-therapy-spurs-nerve-fibers-to-regrow-through-scar-tissue-transmit-signals-after-spinal-cord-injury-in-rodents
My bladder and bowel is working now, but at first for about 3 weeks after my surgery i was having problems with that. Still until to i have problems maintaining an erection. Not good for some who is 38 but, I guess it could be worse. I will continue to pray that you make improvements.
Hi Eddie 100
unfortunately I have been living with this since December 2012. Everyone’s situation is different but can also be roughly the same with different outcomes. Does that make sense? I have had to have 2 operations and 2 nerveroot blocks the last of which was June 2017. Over the last few months things have taken a turn for the worst.
My symptoms being excruciating pain bi-laterally in my outer and inner thighs into my calves then into my feet.
Honestly thought after the first discectomy and decompression that things were going to be alright. Up to 6 months after the operation and all was well. Honestly thought I had dodged a bullet, figuratively speaking. Then the discomfort started. Firstly in my legs and later in my back. My consultant was loathed to go in due to risk
However he did. His attitude was horrendous and when I saw him a year later after discussing the issues and the effect on the family in general, he smiled and said that we were a defunct family. Add to that his attitude was abhorrent. Needless to say I changed consultant pretty quick and raised a complaint.
fast forward to December 2016 I got an appointment to see my new consultant. He agreed that something needed to be done further. In June 2017 I was cut upon again. Had Laminectomy and decompression done. Again 6 months later the issues started again. In June this year I had another nerve root block (first was in 2015). Now 4 months in things are very bad. Next appointment is in December this year to discuss way forward and possible further surgery. However whilst mine is a horror story of sorts there are people I’ve met who have recovered to a point they can do most things that they used to do. So there is light at the end of the tunnel....just hope it isn’t a freight train like it was for me.
Also whilst it may not be a concern now ask to see your notes. In mine(I always look at them when I’m left alone in the consultation room). During my snooping I have noticed erroneous entries and photographed them and during further visits I have noticed entries have been changed (not consultants writing) or missing altogether.
My symptoms will never fully go away and most of the nerve damaged was caused due to the hospital missing the recommendation of surgery (must be done within 48 hours otherwise damage caused could be permanent). That was December 2012. Presented at A&E all they did was ultrasound my bladder(which was full) and sent me home. Now I had a symptom with a twist. Whilst I was retaining urine, on occasion the dam would burst I I would not be able to stop the flow, I had no control. Then 8 days later I was admitted as an emergency. This was after an ambulance crew had to come to me twice where the on call doctor refused to believe it was an emergency. The time from first call was 12:00, the second was 18:00! All 6 hours were excruciating. My entire left side was paralysed with searing pain from my back to my leg and my foot was cold to touch and no feeling. That was on the Saturday. Sunday in hospital I was in A&E until 11:00 on the Sunday morning and 12:00 the reluctant consultant arrived to roll me in to theatre. I was in surgery for 7 hours straight. When I came to I spoke with the neurosurgeon and he was fairly dismissive and would give me answers and to explain the Massine bruises on my chest and shoulders. He refused to talk about it and refused me access to my notes. Of course when I
was alone with the notes I found out why. Sufic
sorry....
sufice to to say he was trying to protect me..I’m a black and white guy no grey fuzzy areas.
it was an eye opener. They had to resuscitate me twice. That is where the bruises came from.
As I was saying previously there are a lot of successes out there, in the region of 75%-25%. They latter are the ones with recurring issues.
sorry about the reply over 3 messages but I’m on a pad and have fat fingers so I end up mashing keys. If you want to talk DM me.
Ade4072... That all sounds barbaric! Are you in the UK or where? That would not fly in the US.
yep in the UK. Done through NHS. Right now I'm on the verge of being given an appointment for op number 3. But think its going to be admission A&E before that I think as I'm at the retention stage and searing pain again on opposite side from the from the original. Good job I have catheters here so I can ISC. Oh the joys of the human body.
I tried multiple therapies. Took about two years to get my calf muscle back. PT to restore muscle mass and had chinese cupping done on my back to alleviate pain. The cupping worked better then any pain killer and I still use it today.
Just wanted to report on my recent "discovery". I got CES 11 years ago in an accident that caused a burst fracture of the L2 disc so they bridged it with metal (a fusion). It is a horrible condition. However after 3 years things started to get better as some nerves recovered to varying degrees. Still, some days the neuropathy in my feet and legs drives me nuts. I recently started trying different nutricetals in larger amounts because many of the journal articles report relief when using more than comes in the average capsule. So last week I took 4 capsules of fish oil with one meal. (Each one contains 575 mg EPA and 425 mg DHA.) This is the first natural substance that had a noticeable effect, calming the nerves to some degree. It may be worth a try. Everyone reacts to substances differently and it may help you. Best of Luck!
Thanks Deang thats good to know and I'm pleased to hear thats working for you.
I see that theres quite a lot of research being published now showing the postive effects of fish oil for neuropathy .
How do you work out the right amount to take ? And what brand are you taking ?
Are you still taking them daily and still finding them beneficial ?
Hello,
Good luck with your recovery. The first couple of years is an uncertain time. I am 3.5? years out and still learning.
I have found good resources in Dr Forest Tennants's writing ' Arachnoiditis handbook'- free public resource available on internet.
Although the handbook is titled for 'Arachnoiditis' many symptoms are shared and particularly the 'chronic cauda equina' or living with nerves afterwards, seems to lack of description.
The handbook helped make sense of things I had found via hit and miss with my physio including.
Lumbar bracing (when appropriate) esp in public areas and for driving - this would not be appropriate by a physio in some other back / muscular conditions. I have found other things helpful - curcumin , valerian, bromelain supplements. Again as trial and error on myself with professionals. Having supportive GP, physio , pyschologist (mindfulness) all help. As does tens (for pain and a distraction of crawling legs feeling) , heat pad and adapting life around being flat alot of the time/ moving not sitting.
I wish you well in your recovery. If you are already reduced pain , wonderful news for you and I hope the positive things keep going.
Also if you can accept the 'new ' body. Whatever that ends up being. I have found that acceptance is a battle of it's own and the start of over coming limitations is the start of overcoming them. Bit hard if you've months and years of not quite knowing, been there. Hope my message was of some help to you. Take care
Oops was trying to say, 'start of overcoming limitations is accepting them. '
Thank you maryanne thats helpful advice
Just started taking more than one a few days ago. I take more if needed. EPA and DHA numbers were taken from research literature. Brand is Spring Valley Omega-3 from Walmart.
Hi Eddie,
Glad to be of help. The handbook that I read that was particularly helpful and defines 'chronic cauda equina' was the one published by Dr Forest Tennant in July 2017 and is called 'Arachnoiditis handbook for survival ' . I was tired when writing before but was trying to say this was the first place I had found after scouring the internet that had any easily read description and tips for living with 'chronic cauda equina syndrome'. There are subsequent 'arachnoiditis' handbooks that link from the dame public information site 'arachnoiditis hope' . Not anything selling or commercial, just a kind american Dr whom is widely published providing tipd. I am not saying these things are the same disease, but I had alot of 'aha' momments with my gp reading that resource. I too came on here , this forum during my earlier recovery time looking for others and had not found much clear information on the 'after' for CeS ERS like us online. Just alot on the emergency stage published by medical people.
This is an excellent supportive forum too and helped me push for treatment back in the day. I was on here asking the similar questions you are too, earlier along in my own journey and some of the lovely people on here then helped me.
I dont get time for reading much - I have managed to do work part time and thus alot of spare time is spent dealing with the fatigue to keep that up. Please do keep updating on your progress and recovery or any tips you find too for living with CES. I am still learning too years along. Take Care. Wishing you lots of nerve growth!
I'd like some of the same information. I'm probably expecting too much too soon, after only 100 days post surgery, but I would like to see a bit more progress than I've had so far. It sounds like you are standing at least.