When my daughter was 12 she launched herself off a trampoline onto frozen ground and fractured and dislocated her elbow. The fracture and dislocation where easy to treat, but she also had some nerve damage which restricted her finger movement and feeling in her right hand.
Slowly came back little by little but probably took a good 18 months to be back to normal. She wasn't given any physio to treat the nerve damage (she was for elbow mobilily after cast was removed) - advice was nerves will either fix itself they won't.
Really sorry to read that. It must be so frustrating for you…
I think all you can do is be patient and stay positive. As your surgeon has probably said, nerve tissue is basically rubbish at healing itself compared to almost everything else in the body….. but it is able to heal itself slowly and hopefully you will continue to gradually improve. I’m not a doctor but I’m unaware of anything you can do apart from good healthy diet etc. & keeping going with the physio exercises - it will at least let you maximize the nerve function you do have, even if it can’t help the nerve pathways improve quicker.
Recovery from major nerve damage is possible, but it takes time, hard work and is incredibly frustrating.
I had surgery in 2017 for a non-malignant brain tumour: a vestibular schwannoma. The sheath round one acoustic nerve grew uncontrollably, pinching it. Even operating carefully (it took ten hours), the neurosurgeon damaged other nerves (they are bunched tightly together where they lead out of the skull). I couldn't swallow, I could only talk in a hoarse whisper, and one side of my face was paralysed.
I didn't have the strength to go back to work, so did about four hours physio a day, six days a week. Neurological rehabilitation, speech therapy, swallow and general physical; NHS physiotherapists were great! Once they saw how I wanted to recover, they worked with me, taught me how to manage my own recovery and handed sole responsibility to me after eighteen months (with the offer of further guidance if needed). I felt the need to go back to work for social contact, only managed part-time, and didn't have much energy left for physio, so my rate of recovery then slowed.
I was chatting with someone the other day: he kindly said that my face had become more animated in the time I had known him, which is since 2021 (so from four years after the surgery to nine years after). I don't think he was just saying that, and was pleasantly surprised, as improvement tends to reduce with time.
I learned that working at rehabilitation does succeed, but it can be very frustrating: there are bad days as well as good. Brain plasticity is a real thing; if you have been unable to do anything for a length of time, your brain will have rewired that bit of itself to do other things. You have to rebuild the neural pathways to make things work again; the explanation that worked for me was like a car crash blocking the main road. Traffic will eventually find alternative routes, even if they are only country lanes. Once those lanes start being used, they will be improved.
If you want more information, please let me know, but I'm afraid I don't often visit here, so may not notice for a while. I improved my balance enough to go back to Morris dancing (hence the user name Jingle), but not enough to cycle safely.
Really sorry to read that. It must be so frustrating for you…
I think all you can do is be patient and stay positive. As your surgeon has probably said, nerve tissue is basically rubbish at healing itself compared to almost everything else in the body….. but it is able to heal itself slowly and hopefully you will continue to gradually improve. I’m not a doctor but I’m unaware of anything you can do apart from good healthy diet etc. & keeping going with the physio exercises - it will at least let you maximize the nerve function you do have, even if it can’t help the nerve pathways improve quicker.
thanks, been on a good diet, zero alcohol etc for the last year, doesn’t seem to have made one iota of difference.
Acutely aware there is nothing I can do to speed up the repair, or improve the changes of full repair.
the physios made a good case for maintaining a positive outlook and how that has been shown to make some difference. This I’ve not managed so well.
Recovery from major nerve damage is possible, but it takes time, hard work and is incredibly frustrating.
I had surgery in 2017 for a non-malignant brain tumour: a vestibular schwannoma. The sheath round one acoustic nerve grew uncontrollably, pinching it. Even operating carefully (it took ten hours), the neurosurgeon damaged other nerves (they are bunched tightly together where they lead out of the skull). I couldn't swallow, I could only talk in a hoarse whisper, and one side of my face was paralysed.
I didn't have the strength to go back to work, so did about four hours physio a day, six days a week. Neurological rehabilitation, speech therapy, swallow and general physical; NHS physiotherapists were great! Once they saw how I wanted to recover, they worked with me, taught me how to manage my own recovery and handed sole responsibility to me after eighteen months (with the offer of further guidance if needed). I felt the need to go back to work for social contact, only managed part-time, and didn't have much energy left for physio, so my rate of recovery then slowed.
I was chatting with someone the other day: he kindly said that my face had become more animated in the time I had known him, which is since 2021 (so from four years after the surgery to nine years after). I don't think he was just saying that, and was pleasantly surprised, as improvement tends to reduce with time.
I learned that working at rehabilitation does succeed, but it can be very frustrating: there are bad days as well as good. Brain plasticity is a real thing; if you have been unable to do anything for a length of time, your brain will have rewired that bit of itself to do other things. You have to rebuild the neural pathways to make things work again; the explanation that worked for me was like a car crash blocking the main road. Traffic will eventually find alternative routes, even if they are only country lanes. Once those lanes start being used, they will be improved.
If you want more information, please let me know, but I'm afraid I don't often visit here, so may not notice for a while. I improved my balance enough to go back to Morris dancing (hence the user name Jingle), but not enough to cycle safely.
thanks @jingle, this resonates completely with my experience - even though different parts of the body. Also holy cow that sounds much worse than my condition, hope you’re all ok now.
its frustrating as hell, I know I have to keep trying the actions / muscles / movements that I can’t really control as unless I do that there’s a greater probability the body forgets and has no impetus to recover and keep the signal channels open. Not the greatest terminology I’m using there.
was explained to me that the wires are broken and the signal is either scrambled or not getting through.
there are definitely good days and bad. The bad days - after what is quite some time post op, can be quite dark, as it really does feel like this is as good as it’ll ever get.
When I snapped my foot off, I severed many of the nerves connecting the foot to the leg. This prevented me moving my toes or even feeling my toes or foot. I spent six months in bed while they were deciding to amputate or not, and one of the key criteria was: will I be able to move anything in my foot? Was I able to feel it, or was it just a useless appendage?
Not wanting to have my foot chopped off, I really focused on trying to do something, anything with it. It was extremely frustrating and seemed to do nothing for ages, but slowly, slowly it started to recover. The physical movement came first. I can move my big toe almost 30% of its normal range. My little toes, I can sort of curl a bit, but the nerve damage was the most amusing(?) bit of the recovery.
The broken ends of my nerves in my foot seem to connect up to the nerves that have been severed in the leg. Apparently, this is what nerves do. Unfortunately, they didn't connect up the right bits, so if my wife touched my big toe, it felt like she was scratching my heel. My little toe was connected to the ball of my foot. We had four months where we played the toe game. My wife would touch part of my foot while my eyes were closed, and I would say where it felt like it was. I would then open my eyes and look where it really was. Over this four-month period, I managed to train my brain to realise that when it felt like she was scratching my heel, she was actually squeezing my big toe.
It's still not perfect. I've got a large area just behind my toes where I can't really feel anything, and I've lost the spatial awareness of where my foot is, so I bump into things quite a lot. Having said that, it seems to continue to improve very, very slowly. I mean, it's 15 years since I've done it, and it seems the the majority of the recovery was in the first five years, and then a little bit more over the following five years. Now I don't really know necessarily of further recovery, but I do have some sense of feeling in the foot, and I can tell when I've stopped my big toe.
I really hope you have the best recovery possible. It can be so frustrating when nothing seems to change and then suddenly there is a little bit of change. Keep a record of how you're feeling and what you can feel, and then refer back to it every three months or six months, just so you can actually see these tiny little incremental improvements. Otherwise, you might not notice them.
I feel your pain, nerve injuries really are bad, especially if you get the 'phantom' pain with it too.
I broke a collar bone 20 years ago and the bone destroyed a 2" section of nerve that supplied feeling and movement to most of my shoulder, arm, and hand.
They replaced the 'sheath' of the nerve with a section of donor sensory nerve from my forearm (a slightly smaller diameter tube) and then everyone kept their fingers crossed whether it would take or not.
The general consensus is that nerve growth is 1mm/weekday and after around 9 months I started to get a tiny firing of my tricep while at a hydrotherapy session.
All in, I've had good recovery BUT some of the lower arm and hand muscles were out of action for so long that they have atrophied and will never work again, I often wonder if a TENS machine would have kept them alive enough for the nerve to do its thing, but who knows eh?
ROM exercises/passive stretching, Mirror therapies, Hydrotherapy, and everything in-between helped to a certain degree along the way.
Don't underestimate the little exercises too, it's amazing how much benefit you can get from resistance bands, when focusing on the hard to reach stabilising muscles, I've only just started working on this, and I've made huge mobility gains, I only wish I paid more attention earlier on.
And accepting the steps backwards as well as the positive strides that occurred.
Be mindful, as PTSD is a real risk with an injury like yours.
When I snapped my foot off, I severed many of the nerves connecting the foot to the leg. This prevented me moving my toes or even feeling my toes or foot. I spent six months in bed while they were deciding to amputate or not, and one of the key criteria was: will I be able to move anything in my foot? Was I able to feel it, or was it just a useless appendage?
It's still not perfect. I've got a large area just behind my toes where I can't really feel anything, and I've lost the spatial awareness of where my foot is, so I bump into things quite a lot. Having said that, it seems to continue to improve very, very slowly. I mean, it's 15 years since I've done it, and it seems the the majority of the recovery was in the first five years, and then a little bit more over the following five years. Now I don't really know necessarily of further recovery, but I do have some sense of feeling in the foot, and I can tell when I've stopped my big toe.
I really hope you have the best recovery possible. It can be so frustrating when nothing seems to change and then suddenly there is a little bit of change. Keep a record of how you're feeling and what you can feel, and then refer back to it every three months or six months, just so you can actually see these tiny little incremental improvements. Otherwise, you might not notice them.
holy shot, that’s a helluva story. Makes mine feel tame by comparison. Amazing recovery.
ive been keeping a journal since day 1 post op. Shows there has been a consistent miniscule improvement over the last year. But it’s stalled a few times for 6-8 weeks each time, due to other complications, which the consultant told me really wouldn’t help recovery. He told me best recovery would occur in the first 12 months, after that % chance of improving goes steadily downwards.
I feel your pain, nerve injuries really are bad, especially if you get the 'phantom' pain with it too.
I broke a collar bone 20 years ago and the bone destroyed a 2" section of nerve that supplied feeling and movement to most of my shoulder, arm, and hand.
They replaced the 'sheath' of the nerve with a section of donor sensory nerve from my forearm (a slightly smaller diameter tube) and then everyone kept their fingers crossed whether it would take or not.
The general consensus is that nerve growth is 1mm/weekday and after around 9 months I started to get a tiny firing of my tricep while at a hydrotherapy session.
All in, I've had good recovery BUT some of the lower arm and hand muscles were out of action for so long that they have atrophied and will never work again, I often wonder if a TENS machine would have kept them alive enough for the nerve to do its thing, but who knows eh?
ROM exercises/passive stretching, Mirror therapies, Hydrotherapy, and everything in-between helped to a certain degree along the way.
Don't underestimate the little exercises too, it's amazing how much benefit you can get from resistance bands, when focusing on the hard to reach stabilising muscles, I've only just started working on this, and I've made huge mobility gains, I only wish I paid more attention earlier on.
And accepting the steps backwards as well as the positive strides that occurred.
Be mindful, as PTSD is a real risk with an injury like yours.
@monkeyfiend jaysus this also sounds 100x more intense than mine. Holy shot. I’ve not broken anything just woke up one day in so much nerve pain as the main nerve root was totally crushed.
the muscle atrophy also resonates, my left calf has, thigh too. It was only after further tests that they found I’d lost feeling of all the left muscles up to my chest. Makes exercise strange, not impossible but really weird.
will get back to the small exercises, stopped the hydrotherapy etc a good while ago as recommended by the physio.
also as I’ve been told and found out the hard way, that’s it not at all easy. Be careful as it’s east to fall or knock the foot etc, as there’s a lot of compensating going on, no way to know if you’ve overdone it, damaged anything as there’s only limited feeling.
One thing I haven’t been good at is the mental side, keeping positive and glass half full - this I haven’t managed yet. Believed that if I focus on improving the nerve I might not have to worry about it, but that’s not going to work.
He told me best recovery would occur in the first 12 months, after that % chance of improving goes steadily downwards
I reckon I got 40% back in 12 months, 20 the next year and perhaps 10% the following. After that I am not sur eif it got better or I got used to it.
I often wonder if a TENS machine would have kept them alive enough for the nerve to do its thing, but who knows eh?
I got one of these from Amazon for about £25. IT did nothing to recover the muscle as my ankle was fused eventually so the muscle wasn't used BUT I would get one and try it. It did help stimulate the nerves in my foot and wasn't unpleasant to use. You just stick the 4 sticky pads on the fot and switch it on for 15 minutes.
If it does nothiong then you have spent £25 on a novelty toy to put on your friends and make thieir muscles twitch which is quite funny. Don't try it on your personal parts ( a friend told me) as it is less pleasant.
TENS machine ordered. I’ll give it a go.
Don’t think the physios have suggested this so far, or maybe they have and I’ve just forgotten.
consultants view is his job is done, recovery is all down to time and some degree of good fortune
I can't offer any personal stories of hope; however, I do recall reading (on here?) about someone recovering from a brain injury, and they attributed a step change in their recovery rate to taking high-dose B12 supplements. Apparently, it's vital in nerve growth, since most of your life, there's minimal need to grow nerves; the normal healthy intake can be insufficient to repair significant damage.
If you're not already taking B12 it may be worth investigating. I'm not a doctor, etc...
The general consensus is that nerve growth is 1mm/weekday...
The thought of nerves having the weekend off is amusing more than it probably should.
I can't offer any personal stories of hope; however, I do recall reading (on here?) about someone recovering from a brain injury, and they attributed a step change in their recovery rate to taking high-dose B12 supplements. Apparently, it's vital in nerve growth, since most of your life, there's minimal need to grow nerves; the normal healthy intake can be insufficient to repair significant damage.
If you're not already taking B12 it may be worth investigating. I'm not a doctor, etc...
will research this before diving in, definitely not taking any supplements.
but why is the suggestion to improve things never beer and crisps ?
I got stabbed and it cut a nerve in my arm, and did a fair bit of research.
Nerves grow at a certain speed, but if they dont regrow fast enough to get down to the contact point (the neuromuscular junction) then it dies then that muscle cannot get nerve signals into it (reinnervate) and it atrophies (goes wobbly and shrinks).
I think its a couple of month long window.
I've a stab wound on my wrist cut into one of the nerves. Healing took a couple of years to get to a point where there were no 'twinges'
But it was less than a year before it got to the point it was ok and only if i twisted my arm in an unnatural way caused that almighty electric shock type pain that shoots up the arm.
I had to have an operation on my hand due to a bone deep cut that caused some nerve damage. It took a couple of years and it's still a bit dull but there is feeling where there was numbness.
A little over 20yrs I had a motorbike crash, and one of the injuries was my arm being torn from the shoulder (thankfully a good leather jacket meant it wasn't lost on the road!). Because of other injuries, the surgeon wanted to plate it back on with a plan to amputate it 12 months later. Prognosis was not good. As part of this, there was considerable nerve damage/cutting/mess.
Probably because of a super-good surgery team, a brilliant/motivating physio approach, and me getting a bit super-focused about not wanting to lose an arm, the recovery has been excellent. For sure, the elbow/hand is a different sensation to the uninjured arm, but I reckon nobody would know in normal life.
My reflection on it is to create your own principles, get super focused on what might help and go for it 100%, and if that doesnt work, try something else. I've run thru goodness knows how many east Vs west physio philosophies and techniques, but it kept me motivated and going at it.
Don't give up!
