[Bevan-L]

for those of you who regained some function/sensation, what did it feel like when the sensation returned? did u just wake up and bam it was there or did you feel like you had pins and needles and it came back slowly???????

[crhindc]

This is a great question. I'd like information on this, too.

Also, was there increased spasticity or other noticable signs in retrospect?

Thanks.

[tonimichelle]

i have sensation on my whole left side and i think it's been that way from the start but i have had increased sensation on my right side. my arm and back (the 2 places its gotten the most return) often burn or feel like i've been sitting with that part of me in the sun too long. in rehab i used to ask my nurses if they could feel the heat too but they said it was my imagination....

any movement i've gotten back just happens....like one night i stared at my hand willing my thumb to move for like 2 hours and with no warning it moved up and down.

hope this helps....toni

[Ches]

I havent had a sudden movement return. Its been really gradual for me. Its been a matter of just working those signals over and over, and of course exercise to regain the strength to utilize muscles.

As far as sensation, I never noticed a corelation between burning and surface return. But I have noticed it starts deep within. Kind of like a core awareness, muscle moving/bones vibrating/etc, then it just developed into a 'just below the surface feeling'.. I have some patchy area with 100% full surface returns but mainly just below my level of injury and I honestly didn't notice, the doctor did.

I wish I had more for ya, i remembering posting a thread asking the same questions just after my injury. I heard a lot of stories about people waking up in the middle of the night in horrific pain, then rewaking in the morning to find the could move their bodies... Never actually experienced it though. Just been a really slow, and gradual process.

[Slowlegs]

Bevan-L, on Apr 3 2009, 06:59 AM, said:

for those of you who regained some function/sensation, what did it feel like when the sensation returned? did u just wake up and bam it was there or did you feel like you had pins and needles and it came back slowly???????

Mine was more general major nerve damage but with similar results to SCI. For me it started as no feeling, then a warm feeling, pins and needles and numbness (like I had hit my thumb with a hammer) after that, hypersensitivity followed by gradual normalisation. Even if a fly landed on my feet at first it was really painful. People touching me really hurt and it took a while for the doctors and nurses to remember not to touch my feet when they came into my room. Feeling still hasn't returned to normal totally 23 years later but I can sense most things, sometimes it feels like I am being touched in different places and still get shooting pains at times which are a killer.

This post has been edited by Slowlegs: 03 April 2009 - 08:14 PM

[Bevan-L]

the reason i asked was for the last 2 days everywhere below my level of injury have had massive pins/needles feeling and like hypersensitive feeling not to touch but like movement?? i dont know if im imagining things or is it just phantom pain?? yesterday in the car it felt for the first time almost like i had muscles to move my right leg.... each time i tried i got a small spasm... until the last time i tried im dead sure i was keeping my leg upright cos when i stopped it moved back towards the other one and rested there.

im kinda like wtf is going on??? i dont wanna set myself up for thinking something is happenin but in the end it turns out to be just all mind games or something? please tell me im talking shit if i am hehehe i just dunno... im 6 months post injury, was diagnosed T4 complete, and only on 600mg gabapentin and 5mg oxybutin/ditropan 3 times a day.

[Ches]

You know come to think of it, I get really warm on the outside and tingly on the inside when I first start using new muscles.

Don't be discouraged, keep trying. Whether the scenario was coincidence or not - there's no way to know for sure.

Im a t4/t5, was diagnosed complete as well.

[Bevan-L]

thxs heaps Ches, im gonna keep at it and see what happens hope ya get more n more back too ;)

[Bevan-L]

ok today when i got home got on the bed and i started triggering spasms and movement in my right leg.... im dead sure of it, it happened when i wanted im positive... i done it about 8 times then it felt like my muscles in the leg were too tired or fatigued????

what do u reckon i should do??????? do i seek more physio???????? just keep at it or what...... everyday im getting more and more sure it is me and not just mybody doing its own thing????


Bev

[jaquie_farmer]

Bevan-L, on Apr 7 2009, 05:21 AM, said:

ok today when i got home got on the bed and i started triggering spasms and movement in my right leg.... im dead sure of it, it happened when i wanted im positive... i done it about 8 times then it felt like my muscles in the leg were too tired or fatigued????

what do u reckon i should do??????? do i seek more physio???????? just keep at it or what...... everyday im getting more and more sure it is me and not just mybody doing its own thing????


Bev

the same thing happened to me when i first could move new things. i would do it over and over until my muscles wore out and quit responding. do it as much as you can tho. think of it as if you were working out. the more you build up your strength the more weight you can do.

[cubanito_016]

I never got eny sensation back but boy I will love to.

[Bevan-L]

yup still going here, doing it as much as i can before my muscles decide to give up......... gonna hop onto a FES bike asap to help it along......
also found something new tonight, i could sit on the bed and lean back and keep myself at around 45' and keep myself up... cant do it from laying down but i dunno if thats cos my core muscles are not strong anymore?????

This post has been edited by Bevan-L: 08 April 2009 - 02:14 PM

[Ches]

Thats all great bevan!! Just keep doing what you're doing.

What you're describing is alot like my current situation as well. Its been said that I can 'move' down to my knees, but you'd never believe me b/c Im too weak to move my legs dead weight enough to ever help! Thats where exercise is needed. You'll be strengthening the signal and the muscle.. you need to do it as much as you can bare. Flipping on your stomach, and learning to get up on all fours, then crawling are really good for certain muscles. Then just sitting up, indian style..try to hold your torso straight as possible.. no slouching.. try it without using ur hands.. its a great starters exercise for your core..

Sorry Im losing my train of thought here.. ipod's got my attention! best of luck to ya!!

[twisted_ophelia]

Mine came back slowly in the first couple years after I got hurt and then for years, I had nothing more return, and then a couple years ago (almost a decade post injury), I started getting more sensation return, particularly on my right side. My left side kind of sucks. As well as some function. I credit horseback riding and very aggressive neurophysio. I can feel pain, have tingling, warmth, sometimes know when someone is touching my upper legs (though it doesn't feel like a regular touch) and can sort of feel my ass. It's far from normal sensation but it's better than nothing. I've heard of others who had sensation/function trickle back over the years, sometimes over a decade post-injury. Bodies and spinal cords are weird. I'm still working on getting more and more function back in physio, particularly in my hips and abs. Try to teach yourself to crawl. This works wonders. It's not easy but it's helpful. You'll probably be only able to do and inch or two at first but then aim for a foot, two feet, etc. Keep strengthening those signals, as Ches said, keep the nerves firing. I constantly sit around at home and invent little exercises to do for myself, a lot of yoga style stuff out of my chair on the floor, plus the at-home physio exercises I do almost every night. I am not trying to up and walk again because, for me, right now, that's a pipe dream but my goal is just to keep getting a bit of function here, a bit of function there, more sensation, etc. It helps with daily life, keeps up muscle mass, keeps the blood flowing where it should, helps with swollen feet.

[wheeliebear75]

I went from not feeling anything to feeling like they'd been shot up with Novocaine. As the sensation came back......OMG it came back alright but I'm not so sure that I would call it a "good thing". Quite frankly it hurts like Hell (the hypersensitivity stayed & it is quite painful). I'm able to feel most things that are happening to my feet and/or legs but no where near full sensation I've burned myself holding the pizza box because I didn't feel it was too hot. After the 1st 5yrs I saw no more improvements, and it didn't seem to matter how hard I tried........actually I have lost some function and sensation due to nerves being pinched from failing discs. Oh yeah and while riding a trolley a guy parked his electric scooter ON my foot......I didn't know it til another passenger pointed it out.

Even for those of us with "similar injuries" we can still have vastly different outcomes. Just keep working at it with the idea that you're going to try but if it doesn't work out then at least you tried.
Good luck.

[newT12]

My boyfriend got some feeling back since his injury in April. I remember one time he was complaining that his right leg hurt like crazy.. he didnt know what was going on and when he put his hand there, he realized he felt it! As others have said, its not 100% feeling, more like pressure. He also got some feeling back in his left leg, and that felt like someone was stabbing him he said. it was hypersensitive for about 2 days, i couldnt even slightly touch his left side it would hurt him a lot, a few days later he got some feeling back and the pain went away he said it almost feels the same as the pain u get when ur leg or arm falls asleep.