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  • C5 Incomplete, Asia B?

    I know we are still early in the SCI injury community, but I'm driving myself crazy trying to research and was hoping I could come here and get some information from either Dr. Wise or an SCI nurse.

    My husband was in a motocross accident on Sept 8, 2012 and suffered a C6 burst fracture that compressed his spinal cord by 70-80%. He had decompression surgery and was given methylprednisolone within hours after the injury. I believe they had him on this steroid drip for at least 48 hours post injury. He was in the ICU for about 2 weeks while being weened off of the vent. The neurosurgeoun came in daily to assess him and determined that he had C6 function but nothing below that yet. We were told by one of the residents at the hospital that "this was as good as it was going to get" and that he was not likely to improve at all and to be prepared for my husband to be 100% dependent on someone for the rest of his life. This was without a doubt the lowest point of my life, I can't even tell you how I felt when I heard that and even how I'm feeling when I'm typing this.

    He was transferred to a NRH is DC for inpatient rehab on September 26. They completed the ASIA exam on him and have determined that he is a C5 Incomplete, Asia B. He has full sensation in both arms/hands ...basically from the chest up. He is completely numb in his stomach, but has sensation everywhere else. He can feel both legs/feet, he can tell where they are, but he cannot feel the "pin prick" but he is able to feel light touch. He can feel temperature from the chest up, but not in his legs/feet. He has full feeling in his rectum and can feel everything when they are administering his bowel program. He has great arm movement, but no fingers yet.

    He's been doing very well in his physical therapy and his therapist says she can feel his triceps, although they are very week. Using tenodesis he is able to pick up chips/M&Ms on his own and feed himself. He has been improving daily on his trunk control and is able to sit up on his own for longer periods of time, and he is still only a month out.

    We had a meeting with his entire team last week to go over his care and what they are currently doing therapy wise. It was explained to me the importance of turning him every 2 hours at night when he comes home. I asked the doctors if this is something that he will eventually be able to do on his own, and the doctor told me it was very unlikely. I guess my questions is, how can he show such good improvement within a month, yet doctors still be so negative with prognosis? I've learned not to ask doctors directly about prognosis because I know that is the great "unknown" but I have read many articles that say that patients with an incomplete SCI that were given methylprednisolone within 8 hours can have a recovery rate of up to 87%...is this wishful thinking? Some days I feel very optimistic about his recovery and really just the hopes of him regaining hand movement...and then I speak to a doctor and all my hopes are squashed. I guess I'm just looking for any useful information, advice, hope that anyone can give me

  • #2
    Don't listen to the Dr's, the sky is the limit!
    I was told the same thing but I am now C5/6 Asia C, have feeling and movement own to my toes. I refused bladder meds and soon after could urinate normally.
    He is showing great progress already, anything is possible

    Comment


    • #3
      Originally posted by Jim View Post
      Don't listen to the Dr's, the sky is the limit!
      They alway run out the worse case scenario.

      Your motto should be...........

      "Prepare for the worst and hope for the best!"

      The very best of luck to you both.

      Comment


      • #4
        It is still an open dabate as to why doctors feel the need to be pessimistic. It seems we were all told the same thing by our doctors to various degrees of accuracy.
        I'm with Jim. Don't listen. They don't know. One thing is for sure. This will be a long road in the best of all outcomes. Hunker down and learn as much as possible as fast as possible on bowel and bladder mgt. Care Forum is great resource straight from those dealing with similiar issues.
        God bless.

        Comment


        • #5
          Dear Shan103
          Welcome to this forum. I am sorry about your husband's accident.

          Return of function is most likely to occur in the first year following a spinal cord injury. It is difficult to give a prognosis because no one spinal cord injury is the same. Physicians do their best giving information based on what they know and what they have seen in their experience.

          Your husband's rehab will be another 2 months? and during this time it is important to ask the questions of how he will live with a spinal cord injury at home. It is important to live in the present moment of how he is doing today and plan for living at home.

          Hope is how you and your husband get through to the next therapy appt, task to accomplish and through to the next day. Everything is overwhelming right now and you are doing the best you can. Keep up the good work. I will be thinking of you both. Feel free to bring any other questions here.

          pbr
          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.

          Comment


          • #6
            Shan103,

            It is true that close to 90% of patients with incomplete spinal cord injuries recover substantially, including independent locomotion, by one year after injury. However, incomplete spinal cord injury could mean AIS (ASIA Impairment Scale) B, C, or D. 100% of people with AIS D recover walking, 92% with AIS C, and only about 35% of AIS B. The AIS category must also be obtained during the first few days after spinal cord injury. In other words, if a person starts out as AIS A, receives methylprednisolone, and then becomes AIS B after several weeks, this does not mean the same as a person who is an AIS B from the beginning. I attach an abstract of the paper that reported these statistics.

            Yes, early methylprednisolone treatment can make somebody who is close to complete an AIS B or C. But, such a person does not have the same prognosis as somebody who starts out as an AIS A and then becomes B & C after several weeks or months. On the other hand, it is important that these statistics not be used to discourage your husband. About 5% of even so-called "complete" ASIA A patients appear to recover independent walking. While the classification is quite reasonable in providing a guide to recovery, it should not be used to take hope away from people.

            Wise.



            1. Dobkin B, Apple D, Barbeau H, Basso M, Behrman A, Deforge D, Ditunno J, Dudley G, Elashoff R, Fugate L, Harkema S, Saulino M and Scott M (2006). Weight-supported treadmill vs over-ground training for walking after acute incomplete SCI. Neurology 66: 484-93. Department of Neurology, University of California Los Angeles, Neurologic Rehabilitation and Research Program, Reed Neurologic Research Center, Los Angeles, CA 90095, USA. bdobkin@mednet.ucla.edu. OBJECTIVE: To compare the efficacy of step training with body weight support on a treadmill (BWSTT) with over-ground practice to the efficacy of a defined over-ground mobility therapy (CONT) in patients with incomplete spinal cord injury (SCI) admitted for inpatient rehabilitation. METHODS: A total of 146 subjects from six regional centers within 8 weeks of SCI were entered in a single-blinded, multicenter, randomized clinical trial (MRCT). Subjects were graded on the American Spinal Injury Association Impairment Scale (ASIA) as B, C, or D with levels from C5 to L3 and had a Functional Independence Measure for locomotion (FIM-L) score < 4. They received 12 weeks of equal time of BWSTT or CONT. Primary outcomes were FIM-L for ASIA B and C subjects and walking speed for ASIA C and D subjects 6 months after SCI. RESULTS: No significant differences were found at entry between treatment groups or at 6 months for FIM-L (n = 108) or walking speed and distance (n = 72). In the upper motor neuron (UMN) subjects, 35% of ASIA B, 92% of ASIA C, and all ASIA D subjects walked independently. Velocities for UMN ASIA C and D subjects were not significantly different for BWSTT (1.1 +/- 0.6 m/s, n = 30) and CONT (1.1 +/- 0.7, n = 25) groups. CONCLUSIONS: The physical therapy strategies of body weight support on a treadmill and defined overground mobility therapy did not produce different outcomes. This finding was partly due to the unexpectedly high percentage of American Spinal Injury Association C subjects who achieved functional walking speeds, irrespective of treatment. The results provide new insight into disability after incomplete spinal cord injury and affirm the importance of the multicenter, randomized clinical trial to test rehabilitation strategies.
            Originally posted by Shan103 View Post
            I know we are still early in the SCI injury community, but I'm driving myself crazy trying to research and was hoping I could come here and get some information from either Dr. Wise or an SCI nurse.

            My husband was in a motocross accident on Sept 8, 2012 and suffered a C6 burst fracture that compressed his spinal cord by 70-80%. He had decompression surgery and was given methylprednisolone within hours after the injury. I believe they had him on this steroid drip for at least 48 hours post injury. He was in the ICU for about 2 weeks while being weened off of the vent. The neurosurgeoun came in daily to assess him and determined that he had C6 function but nothing below that yet. We were told by one of the residents at the hospital that "this was as good as it was going to get" and that he was not likely to improve at all and to be prepared for my husband to be 100% dependent on someone for the rest of his life. This was without a doubt the lowest point of my life, I can't even tell you how I felt when I heard that and even how I'm feeling when I'm typing this.

            He was transferred to a NRH is DC for inpatient rehab on September 26. They completed the ASIA exam on him and have determined that he is a C5 Incomplete, Asia B. He has full sensation in both arms/hands ...basically from the chest up. He is completely numb in his stomach, but has sensation everywhere else. He can feel both legs/feet, he can tell where they are, but he cannot feel the "pin prick" but he is able to feel light touch. He can feel temperature from the chest up, but not in his legs/feet. He has full feeling in his rectum and can feel everything when they are administering his bowel program. He has great arm movement, but no fingers yet.

            He's been doing very well in his physical therapy and his therapist says she can feel his triceps, although they are very week. Using tenodesis he is able to pick up chips/M&Ms on his own and feed himself. He has been improving daily on his trunk control and is able to sit up on his own for longer periods of time, and he is still only a month out.

            We had a meeting with his entire team last week to go over his care and what they are currently doing therapy wise. It was explained to me the importance of turning him every 2 hours at night when he comes home. I asked the doctors if this is something that he will eventually be able to do on his own, and the doctor told me it was very unlikely. I guess my questions is, how can he show such good improvement within a month, yet doctors still be so negative with prognosis? I've learned not to ask doctors directly about prognosis because I know that is the great "unknown" but I have read many articles that say that patients with an incomplete SCI that were given methylprednisolone within 8 hours can have a recovery rate of up to 87%...is this wishful thinking? Some days I feel very optimistic about his recovery and really just the hopes of him regaining hand movement...and then I speak to a doctor and all my hopes are squashed. I guess I'm just looking for any useful information, advice, hope that anyone can give me

            Comment


            • #7
              Thank you everyone for the response. The neuro team at the hospital with the icu didn't perform the ASIA exam on my husband so I'm not quite sure what he was classified there. He has all the same sensation as he did when he was at the hospital...although im not sure about the rectal sensation I know he could tell when he passed gas and he could feel when he had a bowel movement. Is it likely that he was an Asia B then? Ultimately we would like to have him walking again but right now we are just wondering what his chances are of getting his movement in his hands back?

              Comment


              • #8
                2 Hour Turning

                "It was explained to me the importance of turning him every 2 hours at night when he comes home."

                I was told the same, but was going crazy not getting any sleep. I purchased an Invacare MZ95 low air loss "turning" mattress. They are not cheap… around $6,000 , but if you have to pay for an aide to be there to do the turning it will pay for itself in 3 to 4 months. If not I can honestly say for me regaining the sleep has been priceless. It can be set to turn (rotate) at any reasonable time schedule and angles (up to 45 degrees). There are other turning mattresses/beds as well.

                Note: The mattress must not lay on a surface that could puncture it (like bed frames with springs)

                Comment


                • #9
                  Hi Shan 103, I join the others in welcoming you to the forum. I hope that our collective experience will help you and your husband and perhaps provide some comfort, as well.

                  We are all in different situations but I think the shock of a traumatic injury and the affects of a long recovery are things we can all understand.

                  Your husband is so early in his recovery and there are so many factors that play into how things will turn out for him. The journey through all of that was the hardest of all for me. I found a few things that helped and gave me some sense of control.

                  First, start a journal if you haven't already. The day will come when you ask yourselves when he started to move his thumb or if he had sensation in his foot from the beginning. This is something you can use to document his progress and also to give you an emotional outlet.

                  Find some entertainments for him. He'll be really busy with rehab and probably tired at first. However, see if he can manage some audio books on the ipod or PC. Could he take an online class? It's important not to go stir crazy and lose yourself in a healthcare situation. You know him best so see what suggestions might go over to fill in those hours when he's not involved in therapy.

                  As a caregiver, you need to take care of yourself. You may be working. You may have family obligations. When a loved one is seriously injured, that on top of everything else is overwhelming. Take some time for yourself. The rehab facility can take care of your husband. Go to a coffee shop and spend a hour looking through a magazine, take a long walk, get your nails done. It know it probably sounds frivolous in light of what you're dealing with but keeping the caregiver healthy and sane is as important as taking care of the injured.

                  I wish that your accident hadn't happened. I wish that you had all the answers you need right now and a view into the future. I wish everything would come together beautifully for you both. Really, I do. Please let us know what questions you have. You're dealing with experts here and we want to share what we know.

                  Comment


                  • #10
                    Hi Shan,

                    Your husband's injury sounds a bit too familiar. My little brother just suffered a spinal cord injury on September 2nd. From what I understand, he is also a c5 incomplete, though I have not heard anything about an ASIA classification. Their recoveries seem similar so far - icu for about two weeks, weaned off of the vent rather quickly, etc. I don't think Jamie's triceps are back at all, nor is his trunk stability as good as your husband's, but he seems to have similar sensation. He can pinch two fingers together and curl some of his fingers, but that's aboutit as far as hands go.

                    I wish I had advice or inspiration to offer, but we were given the same type of doom and gloom prognosis at the hospital.

                    Are you in dc? I live here if you are and ever want someone to commiserate
                    with.

                    Comment


                    • #11
                      Warm Welcome

                      Hi Shan 103 I am sorry you / your husband ended up with a SCI etc....

                      Warm Welcome to Care Cure , Here we care & share / help eachother with support , advice etc...

                      FMOE I say within first year is when you'll know & find out more prognosis etc...First Hand ..

                      Never give up on support and hope

                      No 2 injuries are 100% identical so every person who sustains a SCI will heal up or regain sensations at their own pace ...
                      The main part of this Technically is to 1,st know spinal swelling must subside on the cord etc... then possibilities increase over time .

                      Do not take to heart 100% what a hospital or Dr say's ok ?
                      Especially as Swelling resides ...

                      Sometimes Cards turn better and you'll both know over a little more time as more cards are dealt to you both you both may notice much better results ..

                      I believe in Not using or hearing someone medically tell me " No "

                      I Say Yes and it may not happen immediately but Look Rome Wasnt built in a Day
                      Using metaphors is how I like to explain thing's

                      Keeping a positive mindset and you being there supporting him is super
                      I wish you both the best

                      Sincerely ;
                      GL

                      Comment


                      • #12
                        Thank you all for the warm words of encouragement! I have read through so many of these posts and I am truly so inspired by many of your stories. At the same time, I am amazed with how little is known about spinal cord injuries. I guess it IS difficult to treat somethng SO complex. This is a subject that I have learned more from other patients than I have from the doctors. I have been reading so many articles from Dr. Wise and have learned a tremendous amount from him. I think my husbands doctors were thorougly impressed with some of my questions and shocked about what I knew already. I'm really keeping them on their toes! You all are truly an inspiration!

                        On an even more positive note, we discovered last night that my husband can now move his index finger!! I never thought I would be so excited about a wiggly finger, but i am over the moon with excitement! I know it's not much, but I'll take WHATEVER I can get!! Return is return :-) :-)

                        Comment


                        • #13
                          Anyone know where I can find a detailed chart of what part of the spinal cord controls what motor function? I know I saw one, actually several, before but I can't seem to locate one now. I'm just trying to find out what level of the cord controls movement to the index finger...

                          Comment


                          • #14
                            This new educational program, designed for those who are newly injured and their family members, is available on-line here:

                            http://www.spinalinjury101.org/

                            This DVD/video was funded by the Christopher & Dana Reeve Foundation, The Shepherd Center, The Amercan Trauma Society, and the National SCI Association (NSCIA).


                            pbr
                            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.

                            Comment


                            • #15
                              Thank you SCI Nurse! That video was very informative and exactly what I needed to see. I'm shocked i didnt stumble upon that sooner with all of the internet researching I have done.

                              A little update on my husband - We are now at 7 weeks post injury, exactly and he now has tricep return in both arms. The left side definitely appears stronger than the right side though. He also has movement (controlled) in his index finger and the thumb on the left hand. The feeling in the rest of his body is also improving, he can now feel when he is having a bowel movement and can feel when he is being cathed. Typical guy fashion, he has made me and others fully aware that he has full feeling in his genital area and is also able to achieve and maintain an erection. He feels that it's easier to be cathed when he has a semi erection - is this OK for him to do or is this normal? Also should I ask his PT and OT to maybe start doing electrical stimulation on his hands as well now that he is starting to get return there?

                              Comment

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