[lokisdog]

Hello

I've looked through most of the threads in this section and couldn't find much on this topic, so here goes.

I'm a T12 Para, accident was ~ 4 months ago, and initially was complete, no sensation or motor below the site.

July 9th I was able to make my left quad muscle twitch and since then have been lucky enough to get most of my upper left leg muscles to work, including hips and glutes. The right leg is lagging but we seem to be getting aductors and hip flexors but it's faint. Lots of atropy to work out but getting stronger.

I've had NP the whole time beginning about 2 weeks after I got out of ICU. Currently use 100 mg of Lyrica only, 3x a day. Went off the oxycontin and neurontin cold turkey 4 weeks ago, been sober 21 years and hate narcotics unless I have no choice, and the neurontin makes me dopey. They didn't seem to make a difference anyway.

I do work daily with the PT here, lots of pushing on the legs etc trying to strengthen the muscles and recruit new ones. Last few weeks the pain has gotten worse. Lots of pain esp. in the right eg, which I'm hoping means something is trying to wake up.

Anyone who has been lucky enough to get some recovery have a similar experience? Is there any way to know if certain pains are 'productive' pain versus non-productive pain?

Thanks

- Eric
T12 Not complete no more

[Karl187]

lokisdog, on Aug 14 2009, 05:08 AM, said:

Hello

I've looked through most of the threads in this section and couldn't find much on this topic, so here goes.

I'm a T12 Para, accident was ~ 4 months ago, and initially was complete, no sensation or motor below the site.

July 9th I was able to make my left quad muscle twitch and since then have been lucky enough to get most of my upper left leg muscles to work, including hips and glutes. The right leg is lagging but we seem to be getting aductors and hip flexors but it's faint. Lots of atropy to work out but getting stronger.

I've had NP the whole time beginning about 2 weeks after I got out of ICU. Currently use 100 mg of Lyrica only, 3x a day. Went off the oxycontin and neurontin cold turkey 4 weeks ago, been sober 21 years and hate narcotics unless I have no choice, and the neurontin makes me dopey. They didn't seem to make a difference anyway.

I do work daily with the PT here, lots of pushing on the legs etc trying to strengthen the muscles and recruit new ones. Last few weeks the pain has gotten worse. Lots of pain esp. in the right eg, which I'm hoping means something is trying to wake up.

Anyone who has been lucky enough to get some recovery have a similar experience? Is there any way to know if certain pains are 'productive' pain versus non-productive pain?

Thanks

- Eric
T12 Not complete no more

Hello Eric- I'm a T12 aswell.

About three months after the injury I started to get a twitch in my right quad, just above the knee. It was just that, a twitch I could control. Its been four months since then and its gotten a little stronger with no PT (they didn't think the movement was anything worth working on) and I can move my foot a little. With the help of my hips it moves a little more aswell. It doesn't help me do anything but its something nice to have at least and I make sure I keep twitching it every day.

I get a little pain on my rigth side aswell, but not in the leg so much as in the hip area above the right leg, dunno if its productive or not- its just bloody annoying.

I hope you get more movement back.

(Could you tell me what sort of PT you do with your leg to try and strengthen the movement? I wouldn't mind having a go myself.)

[wheeliebear75]

Hard to say whether it is a productive one or not. Just keep working at the PT & time will tell you if it was the return of something or just the addition of pain. Everyone is different.

[Scribbler]

I thought there was quite a bit on the site about nerve pain, but I know finding topics here can be hard.

I suffered for years with nerve pain. I was given Gabapentin, which doesn't suit everyone but I don't have any pain now.

Mike

[lokisdog]

Karl187, on Aug 14 2009, 11:35 AM, said:

(Could you tell me what sort of PT you do with your leg to try and strengthen the movement? I wouldn't mind having a go myself.)

Hey Karl

So keeping in mind I'm not a real PT (but I play one on TV ;-), basically we just at first started to get as much innervation to the muscle as we could by having me do isometric contractions of the muscle(s) as they started their twitching. After that, as we got more of the muscle body working we started trying to get the muscle to work. This basically consists of me trying to move the leg in various ways, e.g. trying to push the foot towards the end of the bed, trying to raise my knee to my chest, trying to move my legs together (adduction) then apart (abduction) etc. This does two things, it starts to work the muscle but also potentially recruits others to start innervating and waking up as well.

Now mind you this is very frustrating, you don't see squat for movement for a long time but feels like you're moving 1000 lbs, but stick with it.

She at first did this while holding my legs up and moving them herself through the intended range of motion so they wouldn't be working against gravity or the resistance of the bed (I'm still bed-bound due to other injuries resulting from my accident) but as the muscles got stronger started introducing various levels of resistance.

Obviously working with a real PT is best but you should be able to due the basics of this at home on your own or with a helper, it's better than nothing. And shame on whoever told you a twitch wasn't worth pursuing, in my mind anything should be chased down and investigated to it's fullest.

Good luck and hope you get more too!

- Eric

[Speedrcr]

After years of staying away from these types of forums, I have decided to add some value / experience. Nerve pain is as subjective as the color of the sky. I have spent many years in the medical industry working as well as being a patient from a T-12 injury.

Masking the pain with drugs is just that - masking what is really going on. I consider it a gift, sometimes it is excruciating, pain is the body telling you that something has changed. When the body cannot identify a sensory response, it will go to a default 'pain' response in the brain. if your goal is to get as much back as possible, taking drugs is only hiding things. I learned a lot from Neurontin, as it shut off all recovery, when I quit taking it, I started healing (again this is my take on it). I have a neuro background from work and ask a lot of questions, most doctors don't want to get into any discussion that will back them into a corner. I have seen tough pain change to more normal pain and than normal sensory.

I am walking better, feel all sensory input, and have forgotten what is feels like to not feel my legs. I still have a ways to go, but since I left the doctors recommendations (they have two priorities before 'you' 1: dont get sued, 2: only talk about things that they know inside and out, your body's recovery isn't one of them).

I recommend journaling to measure your progress. Recovery will depend on attitude, persistence, nutrition, and working out, pushing your body. No one will ever have the drive that comes from within you like you have. it's not their job to heal you.

[edlee]

Welcome to the forum, Speedy,, I am happy for you,, that you have recovered so much. I hope you stick around long enough to learn as well as teach.

Having worked in the industry,, you must have heard that there is a group of SCIs, that will NOT recover on their own,, no matter how hard they train,, strive,, pray. For these, at least,, don't you agree that "masking" their pain might not be a bad thing?

I'm only guessing here,, but my feeling is that you were an incomplete,, and that a great deal of your recovery happened within the first couple of years,, then the rest gradually. Perhaps the pain that you allowed yourself to feel helped you to push harder at rehab,,, you obviously feel that it did. Is it your further belief that masking the pain would have prevented the recovery,, if you had workrd just as hard?

If so,, it would be an interesting theory,, and one I hope researchers look at. If one finds something that PREVENTS recovery,, it is altogether likely that the mechanism that does that preventing could lead to something that promotes recovery. Something we all dream of.

Again,, welcome
ed