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T12 conundrum help needed....

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  • T12 conundrum help needed....

    Hi guys,

    Im new to this forum and have trawled through some of the old postings but I've found information a bit scattered. And with my lack of patience these days I thought I would bite the bullet and start a new thread and hope that someone can help me. Mr Young, if you are reading, you input would be very much appreciated.

    Im a 7 month post T12 burst fracture from a fall in the UK. I had two operations. One was the initial posterior fixation of the T11 and L1 vertebrae. After two months I was then operated on again with an anterior fixation taking a bone graft from the hip and filling in the front of the T12 vertebrae.

    I have had 4 months rehabilitation at a spinal unit whereby I have made some good progress. I have good movement in my left and right hip flexors - strong enough to move my legs from side to side whilst sitting in the wheelchair. I also have a flicker of my quad muscle in my right leg - nothing in the left as of yet.

    I think I can move my toes in both feet - although it is not concrete enough to show off about. The same goes for clenching my glutes.

    In terms of sensation, I am able to feel about 12cm down my right leg from the hip but not on the left hand side - which is strange and doesnt help my posture at all when sitting or standing. I also have some impaired light touch sensation in my left leg - ankles, calves (outside), hamstrings and left buttock. Also, I can feel pressure in both feet when they are on the ground.

    I have a lot of tension in my ankles and in my right foot my toes tend to curl downwards (especially after lying down). I have to stretch them out in the morning.

    I am self-cathing about 4-5 times a day - and tend to know when I need to empty - whether that be good discipline or actually feeling full I dont know. I empty my bowels once a day with digital stimulation - no suppositories or laxatives. I am able to feel when my rectum is occupied. Also, strangely enough when I need to go for either a number 1 or number 2 I tend to get spasms in my right glute and right ankle.

    I dont suffer from bad spasms (touchwood) but do find that my calves tend to spasm a fair bit as does my right glute. Also, when I touch my penis/testicles I find that my toes and ankles move. Weird eh?

    In terms of physio, I spend an hour a day standing, about an hour cycling on a leg bike (without utlising the motor) as well as various lower limb exercises such as attempting to kick off the edge of a plinth, strenghtening hip flexors with therabands and also spending time using electrical stimulation on my back and lower limbs. Also, Im just starting to attempt to take steps with AFOs and a walker. Hopefully that will help a lot.

    I tried using an FES bike whilst at the spinal unit about 2 months after my injury and it didnt work. I was told that my muscles were innervated and that was common in injuries at my level and lower. I was gutted as I was very excited to try it out. What confuses me a little is that Im able to use electrical toner/massage stimulators on my feet, ankle, calves, hip flexors and my right glute to good affect now. And Im also able to feel something when I put them on my hamstrings and left glute - although they dont jump. My quads dont seem to respond at all to the toner. So, does that mean the FES bike might work for me now? Any FES experts out there?

    I get terrible neuro pains in my left groin area. I have tried gabapentin but all that does is numb my legs which I would rather not do. My legs are so much more alive without the drugs - so Im happy to live with the pain for now - however evil they are. I tend to breathe them out (in through my mouth and out through my nose). Alternatively, distraction sometimes works.

    Finally, Im able to have erections although the sensation is very impaired - even a little painful. I am not able to ejaculate - which is bloody frustrating.

    Anyone out there seeing anything familiar with my very patchy recovery so far? It seems that lower thoracic and lumbar injuries are like a lottery.

    Look forward to hearing some replies.

    Over and out.

    Fly Pelican Fly

  • #2
    Hi, i'm also T12 5 months post and i see some resemblances with your issue. Sadly for me i have no feelings at all (i also feel about 10cm of my right leg only) and can't move a thing either.
    I stand up and do automated cycling 1 hour a day each. BM each 48h.

    Have you always felt everything you mention here from the beginning of your injury? Is electro stimulation good? I'd love to have more tone on those muscles.
    Don't ask what clinical trials can do for you, ask what you can do for clinical trials.

    Fenexy: Proyecto Volver a Caminar (soon in english too)


    • #3
      It is important to differentiate between your fractures and your actual neurologic level of injury. If you have a fracture at T12, it is most likely that your neurologic level is actually something like L3 or 4, which puts your injury within the conus medularis. It is common at that level to have fairly incomplete injuries, with spotty sensation, unequal right/left outcomes, and variable motor outcomes.


      FES generally will not work on the muscles that are innervated by the actual level of the cord damage, because they will then have a lower motor neuron injury. Electrical stimulation would then have to stimulate the muscle directly (not the nerve) and this often takes so much current that burns result (and even then may not work). Below that you have muscles with upper motor neuron injuries, so FES can usually work there.

      Are you trying to father children? Ejaculation is most important for this. Or is it actually orgasm that you are missing? They are separate events after SCI for most men.

      It would be helpful if you could complete your profile. It makes it much easier to deal with questions.

      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.


      • #4
        0xSquidy - I started getting a flicker in my right hip flexor after about 5 weeks. That then got stronger over the last few months. The left hip flexor started flicking at about 4 months after the injury. The right quad also started to flicker at about 4 months post injury.

        In terms of the sensation in the right leg (the 12cm odd from waist down), I have had that from day 1 - although it has got slightly lower over the last couple of months.

        Yes, tone is major pain in the proverbial. That is why I was so gutted about the FES not working. Had that worked Im convinced I would have been walking with a walker easily by now.

        I have to say, coming off the drugs makes you so much more aware of your legs. Obviously that is not something that everyone can do. But for me, cutting out the tramadol, paracetamol, oxbutynin and especially gabapentin has coincided with the sensations in my left leg and glute.


        • #5
          SCI-Nurse - thanks for your reply. No Im not looking to father children at the minute. Ejaculate or Orgasm? Neither.


          • #6
            Flickers are good.

            My son is an L1 burst fracture, functional to about L3/4.

            With him muscles came back thread by thread. Some made it all the way, some half way, some still at flicker.

            Keep with the PT or develop an exercise program.

            He is able to use a recumbent exercise bike with his feet strapped to the pedals. That has worked wonders for him. It took him months to get the hang of it and build muscle strength, but it has been a great tool.

            Good luck,
            Ugh, I've been kissed by a dog!
            Get some hot water, get some iodine ...
            -- Lucy VanPelt


            • #7
              Thanks PeanutsLucy.

              I have a good regime at the moment which I do at home. I have spent a fair whack on equipment. I try to change up the regime all the time to keep shocking the body.

              I have always been very active and very aware of the muscles in my body pre-injury. I used to do a lot of weight training so as you can imagine the additional frustration for me trying to simply rebuild my quad muscles. I used to hate doing squats, leg press, leg extensions etc at the gym - but now I wish I could do it everyday.


              • #8
                Fly, good luck to you. Sounds like you are progressing a lot after 7 months. I recommend that you have some sessions with a physio who is an expert at SCI - I mean something like Project Walk or SCI-Step. I assume there is something like these places in London. FES does not work for me but these experts can give you a lot of exercises that will help you walk. You don't say anything about standing; but has been pointed out on this site standing (and walking) have many benefits.

                As SCI Nurse said, I had a T12 burst fracture but my neurological level is L2. My sensation and motor recovery are very patchy. I can't move my toes or ankles but knees are strong. I'm lucky - I have no pain.

                Good luck!!

                T12 Incomplete - Walking with Crutches, Injured in Oct 2003


                • #9
                  Another T12

                  My son is T12, Complete 13 months post. He recovered hip flexors and can walk with HKAFO's and a walker about 100 yards, but no hip extenders. He can lift his foot from the floor to the foot plate of his chair and he can crawl forward with no assistance and backwards with little assistance. He has no sensation when cathing but can tell when he's really full.

                  FES didn't work for him either. It was quite painful, we think they placed the pads too close to his hardware. However, he used the bike twice a week for 4 months.

                  Sounds like you are doing well. Keep up the great work. Glad you found us, but sorry you have SCI.
                  FAITH: Is not believing God can, but knowing he will.


                  • #10
                    Try this one.



                    • #11
                      project walk

                      the program is in carlsbad cali. Just north of sandiego. This may give you a better start point for exercise. I am a t12 burst fracture and it was nice no go there for the upbeat attitude towards advanvement.

                      good luck huskerboy