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    Sitting Problems

    Quadriplegic C6-7 injured in 1994. I use a manual wheelchair.

    December 21, 2012
    While I am on my back on the bed letting my left leg down, a pop occurs in my lower right back.

    March 2013
    The injured area in my lower core is not getting any better, right rib is starting to go near the right hip, and so I get a Jay 3 back and use it with my Roho cushion. This helps stretch that area back out and into alignment. However, too much pressure gives me a sore on my left ischial.

    November 2013
    I heal the sore. I am fitted for a Ride cushion, which reopens the sore. Being placed on the hard surface.

    March 2014
    Again, I heal the sore after being down 3 months. Super fancy $4000 custom back is combined with ride cushion. Sore reopens. $4000 custom back is making my right arm inoperable. Nerve stuff. Vendor switches to Jay3, which was on his shelf. Should have tried that first before $4000, but it's only a $300 piece of equipment.

    Sore heals but not great.

    Sit in Ride cushion for eight months hating every day in it. Set off nerve pain. I can put up with a lot but that was miserable and not a long-term solution.

    March 2015
    Getting an MRI and left leg is dropped hard off table. Sore goes Stage 3 super bad. Left lower back pops. I get down in bed for 8 months. Was told by nurse of 30 years has never seen someone with as much diligence and trying to figure it out as me. Waste of time though. Got infection because they left some type of packing material in the wound. It was blue and was melting. Fantastic surgeon fixed my rear. Heavy antibiotics created skin rash on my face, which is better, but areas of my scalp are dry. Never had skin problems like this before.

    March 2016

    I start getting up again on Roho and sling back, which is what I have used for years. Can't transfer to my left anymore because of leg drop and blowing out my back. My guts are sticking out the left side, and the right side of my core is caved in.

    Today
    Because of that leg drop, the core area of my back is now constantly trying to twist and pulls to the left. I fight it all day. 3.5 hours now to get out of bed on bowel day. Used to take me 2 hours before my leg was dropped. After my stretch in the morning, I will cath and that makes the tightness worse. I also now get erections, which pull to the left. That leg drop hurt something.

    I was injured in 1994 and got a sore during an airplane ride in 1995. Didn't know what I know now or it would have been healed. The witch doctors here were worthless. Failed flap surgery that I dealt with for 20 years.

    Their idea will probably be to put me in an electric chair. I will be a tightened up mess if I do that.

    Not sure what to do. I have many more potential years to live.

    I first have to address this twisting and tightening of my torso. I have a baclofen pump, s what could be causing this strong muscle pulling? How can I relax it just a little?
    Last edited by ouch; 15 Oct 2016, 4:53 PM.
    www.myquadriplegia.com

    #2
    I have scoliosis from the deformity caused by my injury. If my back is not extended I spaz up bad. Airline seats, which do put you in a stress position are the worst. In the seating clinic see how you go if you keep your back straight.

    My chair has flat back and squeeze angle of 80deg and a fair bit of dump so gravity holds me against the flat back.
    http://zagam.net/

    Comment


      #3
      Thanks for the input. I have a good amount of dump. I also have slight scoliosis. The problem is this constant pulling to one side. I don't know which muscles are engaged, but they won't stop.

      I can stretch them some by the end of the day. I am constantly trying to straighten my back and lift my body. In the morning, it takes me an hour to try and loosen.
      www.myquadriplegia.com

      Comment


        #4
        I'm not sure how to respond or where to begin. You have been through a lot
        Do you still have a wound?
        Muscle spasms are the result of something that is out of alignment, a frayed nerve...

        Who is following you for your baclofen pump? A physiatrist (physical medicine and rehab physician)? Are you followed by a physical therapist?

        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


          #5
          Originally posted by SCI-Nurse View Post
          I'm not sure how to respond or where to begin. You have been through a lot
          Do you still have a wound?
          Muscle spasms are the result of something that is out of alignment, a frayed nerve...

          Who is following you for your baclofen pump? A physiatrist (physical medicine and rehab physician)? Are you followed by a physical therapist?

          pbr
          Thank you for your reply. It is best if I don't go over every challenge that has occurred.

          I have a physiatrist that I have not seen in maybe 10 years. My baclofen pump refills are handled by her nurse practitioner who I see every three months. I have verbalized what is going on. He okay'd the MRI March 2015. Wish that I had not asked for it. It showed nothing wrong... normal wear and tear for a quadriplegic of 20+ years. The leg drop occurred 5 min. after the MRI. I am flat on the table. My spine is fine. It is muscles/ligaments/? that have been twisted/pulled/out of place that is the problem, and I don't know if an MRI shows that.

          When I am sitting up, there is a hole on my right back area where there should be ligaments, muscles etc., because it is pushing left.

          The wound is gone! Thankfully I had a fantastic trauma surgeon perform the procedure. I do constant pressure releases all day and have for years.

          I would be fine in the Ride cushion if it didn't cause that nerve pain. For 20 years I have sacral sat stretched out. The physical therapist who put me in the Ride cushion told me to ''crush it.'' My body does not like that position. However, I was not having my right rib hit my right hip, which was causing pain. I traded one pain for another.

          For the past 6 months, after rehabbing from the November surgery, I am not in pain. That is good. However, because my left stomach is extended out, and constantly pulling, I cannot transfer to my left. I use a car for transportation. I am not sitting straight anymore and transfers are doable with the aid of a caregiver but my leg hits the switch on the front of the Roho, pushes it and it starts to leak air. I have only gone to a appointments because of this. Shower chair transfers and sitting has changed too. Fortunately I can still do it. I rolloff of the shower chair to the bed. From wheelchair to bed requires a Hoyer lift now.

          Also, with the constant pulling, it goes throughout my body. When my caregiver put on shoes or pants or moves my legs, I can feel every movement, because the tightness kicks in harder. It's the same when I am stretching. Stretch stretch stretch and loosens a little. Move one way and it retightens.

          I can go swimming again. I could probably stretch this out. I am afraid of being in pain again if I stretch it out and end up on my right hip and right rib. That's why I don't know what to do. Right now, I think that I am choosing the lesser of two evils, but it is driving me nuts. I have a high amount of energy in me that needs to be released. I try meditation, but there is nothing the same as good physical exercise.
          Last edited by ouch; 17 Oct 2016, 2:50 PM.
          www.myquadriplegia.com

          Comment


            #6
            what about a good massage therapist who can work on the really tight places a little at a time. have you tried applying heat on very low setting for 10 -15 minutes at a time and of course checking for burning and such?
            T6 Incomplete due to a Spinal cord infarction July 2009

            Comment


              #7
              I have tried massage, but it did not help. of course, that depends on who you get too. I had a great massage therapist that I went to years ago, but she retired. Related, maybe an acupuncturist would help.
              www.myquadriplegia.com

              Comment


                #8
                The area is above or below the insertion site of the baclofen pump. Have you tried capsaicin cream? Heat usually helps but you might need botox to the area/muscle you describe as pulling.
                CWO
                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


                  #9
                  I don't go out anymore because of this. I had an appointment yesterday at the Gen. Dr. for a checkup, so I traveled the 10 min. there and back. Today, my back is wound up locked tight and pulling. They do Botox at my physiatrist's office but pinpointing which muscles are pulling would be difficult.

                  I will look into capsaicin cream. In high school, I remember using cramergesic. I think I have some icy hot around here, I'll try that. The challenge is trying to figure out what muscles are pulling. I hadn't thought about using one of these products, so glad I asked.

                  Hopefully I can be optimistic and there will be an answer for this.
                  Last edited by ouch; 20 Oct 2016, 4:17 PM.
                  www.myquadriplegia.com

                  Comment


                    #10
                    Another product you may want to try is Tiger Balm. I've found it to work better than Icy Hot. The Tiger Balm seems to penetrate deeper and lasts longer. They can also determine which muscle(s) to inject Botox into. I've had this done in the past for the same reason. Good luck!
                    DaDutchman
                    C5/C6 since 2007 due to car accident

                    Comment


                      #11
                      The doctors/providers who do Botox injections do an evaluation of each muscle and they know each muscle. That is what Botox is all about!
                      And if larger muscle then Phenol. They start with low amount and increase as needed.
                      CWO
                      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


                        #12
                        5 months later.... I've been swimming for two months and I feel worse! Had an MRI and it said that I now have severe scoliosis from T5 lower. I have to find the answer for this! My physiatrist said there was nothing that she could do. They wanted to refer me to an orthopedic doctor. I feel that that would be a waste of time. It's not my bones or spine, it's the pulling of my back to the left! I had it somewhat stable until those idiots dropped my leg twice! oh and CWO... Please tell me how to isolate muscles in my lower back, because my physiatrist does Botox and said that they could not help. Her comments were, "Wow. You are not even symmetrical." I am angry and I'm frustrated. All I want to do is just comfortably sit in my chair.
                        www.myquadriplegia.com

                        Comment


                          #13
                          Sorry to hear of your dilemma. Just wondering if you have considered a support brace of some kind. There are various kinds, I guess canvas and plastic come to mind, but skin would need to be considered. I'm elderly, have scoliosis and paralysis due to Polio as a child and have always had to wear plastic "jacket" in order to sit upright all day. My spine curves to my right, making my left abdomen bow out from curvature, but is held in by brace.

                          Because of my scoliosis, almost all of my seated weight is on the left bottom and I must monitor the skin there daily. Soon I am scheduled for a wheelchair seating evaluation where I plan to discuss my needs and hopefully get "pressure mapped". (You are probably familiar with this.) There may be a type of cushion that will suspend my pressure spot enough to avoid constant discomfort. My pressure relief method is leaning way to the right for several seconds; I'm unable to do push-ups anymore.
                          In the recent past, in spite of wearing the brace, I must have pulled a muscle as I had severe pain like a muscle pull in the area of my right back, that put me in bed for a couple of days with ice packs and Motrin; took a week to heal. Decided not to do ANY lifting of objects from the floor, as I can feel that type of motion does flex those muscles. For example, picking up a large size bottle of pop from the floor is too much. I have tried to re-configure my pantry to have most heavier stuff at waist level so I can plop stuff in my lap.
                          I think you will figure this all out, it just takes time.

                          Comment


                            #14
                            I would suggest getting a second opinion from a different physiatrist...ideally someone at the Univ. of WA SCI Center. Botox can be combined with EMG to identify the specific muscles involved. Also follow through with the orthopedic consult. You don't have to have surgery for the scoliosis if you don't want it, but I would at least talk to the orthopedist about this option.

                            (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.

                            Comment

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