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Central Cord Syndrome/Spinal Contusion

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  • Central Cord Syndrome/Spinal Contusion

    My sister had a bike accident three months ago (surgery 2 months ago to remove the disc that was compressing her spinal cord).

    She has central cord syndrome and a spinal contusion at C4. She walks (a little unsteady) and has decent return in her arms/hands (right side weak).

    She did have some bleeding (hemorrhage) in the spinal cord.

    Long story short. She is horribly depressed and we just got her feeling a little better (with her progress, etc) and then she went to her Neuro doc today and he said that the "heaviness" in her arms will "never go away." She's taking this as a sentence that it will never get BETTER.

    Thoughts?

    Is there a chance it will get better or does the hemorrhage make it impossible?

    Thanks so much!!

  • #2
    Hi mcs,
    I think that it is impossible to know. I broke C1 and C2, and they had a tough time just keeping me alive. I also have central cord syndrome and had a contusion. The difference in my condition between two months after the accident and 18 months after is tremendous. I was very weak in my arms and could only walk about 100 yds. In July I walked 8 miles. I rode my bicycle 34 miles yesterday and 25 miles today. My arms and shoulders are still weaker than pre injury, but I can do ten pushups now. Good luck.
    C1/C2 walking quad, SCI from 4/2010

    Comment


    • #3
      One thing I've seen borne out over and over again on this forum is how unpredictable SCI is - it really is impossible for doctors to make pronouncements involving words like "never." And at only three months post-injury, it is far too early for anyone to know how much improvement your sister will eventually see. My colleagues here (like cajun) who have sustained traumatic SCI will be able to give you more information about your sister's situation, as my difficulty is MS and that's in a different category. One thing I know for sure - you'll find a wealth of information here, and people willing to help on this journey. Welcome to the forum!
      MS with cervical and thoracic cord lesions

      Comment


      • #4
        Three months is nothing in a recovery timeline, but the depression and anxiety your sister is going through is not unusual. It took me more than two years to mentally adjust to my changed status.

        As for her physical progress, no one can predict what will ultimately happen.

        I have a central cord injury at C-5 and I am three years and two months post-injury. My biceps and deltoids have no function and other things are weak. I walk, but like your sister, somewhat unsteadily, and have balance issues.

        At two months post-injury I could not pull up my pants above my pelvis or use my arms to push myself up off the floor or up in bed. I could not feed myself with normal silverware or without spilling. I could not use a computer keyboard. I could not "walk" my fingers up a wall. By five months I could do all these things to some extent and I still continue to see improvement.

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        • #5
          Thank you! I really appreciate you!! More than you know!

          Another thing she told me this morning is that the doc said she may always have the heaviness because of "tone problems." She doesn't have spasticity, just the heaviness and tightness (like her biceps are always flexed).

          Can anyone lead me to more information on this!? She seems to freeze when she talks to her doctor so I've been trying to find more information for her.

          She just wants to hear that she CAN get better. Not hear that it isn't possible. Her doctor is a great doc/surgeon but his bedside manner isn't the best.

          Thanks again for helping us navigate through this.

          Comment


          • #6
            Originally posted by mcs View Post
            She just wants to hear that she CAN get better. Not hear that it isn't possible. Her doctor is a great doc/surgeon but his bedside manner isn't the best.
            Andrew Weil, MD calls this "medical hexing," and unfortunately it's a pretty common practice. The fact is, no one can predict what will be possible for your sister - the most that surgeons can do is suggest probabilities based on studies and their own experience, but all of us have individual variations in our wiring and those areas of uncertainty make the word "never" a non-starter.

            Right now, your sister is overwhelmed - at some point, it might help her to look around the forum and get a feel for ways members here deal with feelings, questions and physical issues like the ones she's facing.

            A second or third medical opinion might help with perspective, as well. More and more doctors are coming to recognize the importance of their own words and attitudes as factors in patient outcomes. I would urge your sister to find and stick with experienced therapists who can help her to maintain a viable, flexible, longterm rehab plan.

            Your sister is so fortunate to have your support, and it's wonderful that you're asking these questions.
            MS with cervical and thoracic cord lesions

            Comment


            • #7
              Originally posted by mcs View Post
              Another thing she told me this morning is that the doc said she may always have the heaviness because of "tone problems." She doesn't have spasticity, just the heaviness and tightness (like her biceps are always flexed).
              this.
              I also have significant tone issues, from my head to my toes. Some of the tone has improved with time and some has not. The tone in my arms and shoulders has not changed lots, but they are much stronger, and are still gaining ability. I have been throwing the ball for my dog at the park, and it's going farther. Is your sister on Baclofen, how much?
              C1/C2 walking quad, SCI from 4/2010

              Comment


              • #8
                Central Cord Syndrome

                Unfortunately, you will need to help your sister accept the reality that medical science does not currently offer a cure for CCS...nor is there a consensus among physicians on how to treat it. I damaged my C3,C4,C5 and C6 vertebrae 7 years ago. I have a fusion of C4/C5 and a hugh lesion at the C3 level of my spinal cord. My hands and arms feel like they are encased in 6 inches of concrete and I have incessant, intractable pain in my hands. It sometimes becomes so excruciating that I have actually talked with my doctors about amputation. I know that sounds crazy, but living with chronic pain can do strange things to people. I suggest that your sister talk with a psychologist and a physician who specializes in pain management. There are a host of medications and medical procedures that may bring her some relieve. It is critically that she not lose hope. If one thing doesn't work, then search for the next thing to try. Finding something to make her laugh every day can also help her maintain a positive, forward-thinking perspective.

                Comment


                • #9
                  There is confusion between spasms and spasticity, spasms are uncontrolled movement of muscles, spasticity is muscle rigidity due to incomplete nerve pathways between muscles and the brain triggered by movement which hyperexcites the muscles causing them to contract. Your sisters arms feel heavy because when she moves them the muscles she doesn't have control of contract and the ones she does have control of have to fight them. Spasticity is also called tone.
                  read this http://emedicine.medscape.com/article/1148826-overview
                  or just search spasticity on the internet
                  "Would you rather reduce deficits and interest rates by raising revenue from those who are not now paying their fair share, or would you rather accept larger budget deficits, higher interest rates, and higher unemployment? And I think I know your answer." Ronald Reagan"

                  Comment


                  • #10
                    Thank you! I was having a disconnect between spasticity and spasms. Thank you so much for the article. I'm still trying to figure this out.

                    She is taking 600mg of Neurotin 3x a day (1,800 mg) and only 40mg of Baclofen a day. I guess she can call and increase it on Wednesday if it's not helping. This is a very low dose from what I've read.

                    She is also wondering about the tone and the pain. Why is it that she has no pain when she's sitting/laying and not moving her arms but a lot of pain when she's up and around? Anyone experience this? She also has very little pain at night but it's horrible in the morning???? She seems to think you all have the answers to everything and likes me to post these questions.

                    Sorry if I'm, annoying but I'd love to hear any experiences as possible. Thank you so much!

                    Comment


                    • #11
                      I have central cord due to a hemorrhage after an AC Fusion in 2002. My legs have fully recovered but I have no use of my right arm and only about 20% of my left hand. I remember when the doctor told me that I would not recover any more use. I was devastated. But I have learned to compensate with other muscles and techniques. I returned to work as a pharmacist and worked until last May. The pain comes from the arms pulling down, and in my case actually to the point of dislocating the shoulders. She needs to wear some type of sling to support the shoulders. She is taking a moderate to big dose of gabapentin. She may talk to her doctor about the baclofen Depression is par for the course for any spinal cord injury and I think central cord may even be harder because when you can walk some people think you are fine. Pm me and I’ll be glad to share more. Tell her to hang in there.

                      Comment


                      • #12
                        Originally posted by lhb View Post
                        Unfortunately, you will need to help your sister accept the reality that medical science does not currently offer a cure for CCS...nor is there a consensus among physicians on how to treat it. I damaged my C3,C4,C5 and C6 vertebrae 7 years ago. I have a fusion of C4/C5 and a hugh lesion at the C3 level of my spinal cord. My hands and arms feel like they are encased in 6 inches of concrete and I have incessant, intractable pain in my hands. It sometimes becomes so excruciating that I have actually talked with my doctors about amputation. I know that sounds crazy, but living with chronic pain can do strange things to people. I suggest that your sister talk with a psychologist and a physician who specializes in pain management. There are a host of medications and medical procedures that may bring her some relieve. It is critically that she not lose hope. If one thing doesn't work, then search for the next thing to try. Finding something to make her laugh every day can also help her maintain a positive, forward-thinking perspective.
                        I dont think amputation would help with this pain. I think you would still feel the pain in your hands with them gone. I had a mole removed on my foot two years ago, and when my neuro pain is raging, it feels like I am newly incised and I can even feel the pull of the stitches.

                        Comment


                        • #13
                          Jody is right. Although you feel the pain in your arms, the cause of the pain is actually in your spinal cord. Amputation would not make it go away; you would then be dealing with phantom pain on top of the existing neuropathic pain due to the cord damage.

                          Best to continue to work with a good pain physician, and also explore non-medication types of pain management such as acupressure/acupuncture, TENS, guided imagry, self-hypnosis, and mantram training. Many people have found that while these measure do not make the pain go away entirely, it is more manageable.

                          (KLD)
                          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.

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                          • #14
                            That's the same dose of neurontin and baclofen I was taking,I am stiffer now and the nerves more sensitive, but not worth it to me. Some people take more with no issues. When you move, you stimullate the sensory nerves which stimulate the muscles and cause spasticity, when I'm sleeping, it's almost like I am normal, as soon as I move a muscle, my whole body contracts and I feel like mymuscles are going to pull off my joints, it's a tremendous stretch, and my whole body is stiff, remember we are all different and we react differently.
                            Last edited by trekker6; 10-19-2011, 11:55 AM. Reason: removed a quote, it was confusing
                            "Would you rather reduce deficits and interest rates by raising revenue from those who are not now paying their fair share, or would you rather accept larger budget deficits, higher interest rates, and higher unemployment? And I think I know your answer." Ronald Reagan"

                            Comment


                            • #15
                              Thank you, Jeff! I sent you a message!

                              Trekker - what wasn't worth it? The side effects? What were YOUR side effects and how did you know they were side effects? I know that sound stupid but we've asked her a zillion times if she feels she has side effects from the medication and she says she doesn't know??!?!? She has always leaned towards depression (never treated) so we can't tell what is "real" depression/fatigue and what is from the medication.

                              The "tone" is what she can't stand. She said she can totally deal with the "nerve pain" but the spasticity/heaviness/tightness is what she can't "live with."

                              So, a sling?!! Did your doctor say that or did you come up with it on your own?

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