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Stew in China May 11, 2004

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    boeg04

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      It has been a month since my last update. The stiffness in my hands has returned to presurgery level so now no change in my hands. My chest muscles and the muscles between my ribs continue to function well. The rib muscles assist in breathing so these are helpful. Spasms have begun in my lower back which is new. When sitting on the edge of the mat my trunk control has improved. I have an MRI scheduled for September 21 which will be my first since surgery. The sharp/dull test on my upper body showed slight improvement. My lower body was not tested at this time. My leg muscles are showing slight improvement but is not to the level of useful function. Bowel muscles are closer to returning to presurgery level. My ability to hold when having to urinate has improved in the last month. I can easily hold for 45 minutes to an hour after feeling I could go. It is the ease of holding that has changed. My legs still do not spasm at night like they did before surgery but the spasms are slowly returning. Now my legs want to push straight out whereas after surgery they would lay bent all night. I am currently in theraphy twice a week. I do weight workout, FES bike and either mat work or suspended weight treadmill. Next week I add an hour of OT each session.

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        This month my bowel muscles have returned to presurgery levels. The MRI was done but I have not heard the results as yet. My back spasms are reduced to seldom again. Changes seem to be still in the belt line and legs muscles. I am going to a local gym 5 days a week in October to workout and am not in theraphy. ST Louis is 115 miles so the gym is much easier. My Dr. thought it was a good idea to try this for 4-6 weeks. My feet and legs are beginning to have more feeling/pain in them.

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          Hi Stew, Thanks for update, are they using any estim at therapy?

          "All you have to decide is what to do with the time that is given you."
          Gandolf the Gray
          http://justadollarplease.org/

          2010 SCINet Clinical Trial Support Squad Member

          "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

          .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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            I e stem my hands at home 5 times a week trying to get some finger improvements.

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              Stew, What is E stem for your hands? Looking for info that could help with my son who is a para.
              Thanks susan

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                E stim is provided by a portable electrical stimulation unit. A small pad is placed below the little finger at the wrist/arm joint. A larger pad is placed 3 inches up the arm on the thumb side. Electrical stim is on 15 seconds off 15 seconds for 15 minutes. I can tell the muscles are beginning to fill out between my fingers on the back of my hand and my grasp is getting stronge in both hands.

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                  In the past month my bowel muscles have gotten stronger. I could always tell the need but now the actual doing is within 5 minutes. My left thumb now has a consistent flicker. Midsection muscles are slowly getting stronger but I can still not sit up on my own. While in bed my legs are easier to straighten from a bent position. My legs are more sensative in bed and require me to move them periodically. I was bending them and staying on my side all night. Now I reposition much more. I believe my ability to hold when needing to urinate is getting better. All of these are small and gradual. Nothing amazing or abrupt.

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                    Stew, even the modest recovery is significant. Thanks for keeping us posted.

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                      I have waited to send this month's update until after seeing my doctor. I am getting a very slight finger movement in my left thumb, index finger and middle finger. The right hand fingers are a little stronger. My mid section muscles are very slowly getting stronger. I am noticing more pain in my muscles. Lately it is the left hand fingers, right biceps and leg muscles. Also my legs need to be moved more frequently at night due to discomfort. I can straighten them myself and believe it is getting easier to do so. Spasms are a little stronger in the legs at night. I still believe the overall changes have been for the good.

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                        Hi,
                        I have been following your adventure, and was wondering how you have been progressing. Would love to know, as I have a dear friend that was in a car accident and suffered a crush c-5. I think he might be interested in this surgery.

                        Hope all is going well with everything.

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                          Member
                          posted 12-13-04 10:05 AM
                          One year ago my daughter Daniela (nani), suffered transverse myelitis at the high cervical area.
                          The doctors told me that she was going to die, however today she is at home with mechanical ventilation.

                          Nani is three years old and she is able to breath during a few hours, but the exchange of O2-CO2 is not good as she has not strong enought. She is having constantly pulmonar problems (atelectasias, pulmonia, distress).

                          My questions are:

                          should I take her into Mr. Huand surgery? I think so, but there is any problem in taking this surgery for further surgerys???

                          There is any other surgery in order to me her move al least one arm? ( I refer now to perifehical denervation in the arms as I was told the the second motor nueron in the her arms is dead).

                          There exist any medication in order to make her breathing better like the ones that the people with asma use?

                          Nani is taking daily rehabilitation, but they only move her extremities. On another hand I give her daily electrotherapy and place her standing in a cachine I bought. There are further rehabilitation procedures that my baby can have?

                          Thanks for you answer.

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                            For the past month I have continued working out at the local gym about 3 times a week. Changes are now very subtle. My legs burn and tingle less feeling more normal. My legs and feet also need to be repositioned more often during the night, due to discomfort, which I can bend and straighten on my own. The bottom of my left foot has two tender spots below the toes. Pressure sores that I am watching. Mid section muscles are continuing to strengthen slowly. The inner upper leg muscles are just beginning to show a flicker that can be seen.

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                              My pain has been reduced during the past month. I am now preparing income taxes so the gym trips have stopped until April 16. People who see me once a year say they can see a difference in my hands and posture.

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                                Hey Stew, less pain.....great and thanks for update.

                                "All you have to decide is what to do with the time that is given you."
                                Gandolf the Gray
                                http://justadollarplease.org/

                                2010 SCINet Clinical Trial Support Squad Member

                                "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

                                .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

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