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  • new sci

    Hi I am from Singapore and i met with a car accident while crossing the road. woke up and realise i lost all my sensations from my neck down and was told i would be permanent paralysed neck down for rest of my life... I broke my c2-c3 and am now dependent on a ventilator to help in breathing.. accident happen about a year ago and finally overcome and slowly accepting my new life and slowly opening up again to my new life. learn to use speech recognition software to assist in typing

    just found out this forum and decided to join and gain advices from everyone here facing with some sort of injury

  • #2
    Welcome to our forums and CareCure. Please feel free to ask any questions and post in any of our forums. Please complete your user profile (CP), which is currently blank.

    Have you been evaluated to see if you are a candidate for a phrenic pacer?

    Are you now living at home after having rehabilitation?? How old are you?? How are you occupying your day?? Work?? School??

    (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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    • #3
      what do i have to fill in for the user profile? sorry i am not so well verse in this area...

      i am now living at home with my family after half a year in rehab hospital. 26 years old this year and currently not doing anything except just lying in bed the whole day and dependent on caregiver for everyday needs.. still doing therapy 3 times a week to get myself sitting up again.. hook to a machine and ventilator 24/7.. i have not heard anything about doing any evaluation for any sort of things yet

      for now is to try stabilise and get my body strong again as the blood pressure still drops after sitting up awhile and i get tired easily

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      • #4
        Look at the top left on the tool bar for "User CP" and click on that. Complete your profile there.

        Are you using compression hose and an abdominal binder to help with your blood pressure?? The more time you spend in bed, the harder it will be to tolerate being upright in your chair. Have you been prescribed any medication (such as Midodrine) to help with your blood pressure.

        You will need to ask about the phrenic nerve pacer. It is often not offered or considered. Ask your SCI physician if you can be evaluated. There are two types on the market...the traditional one that is implanted directly on the phrenic nerve (which controls the diaphragm muscle) through the chest wall, and the newer ones that are implanted laparoscopically through the abdomen directly onto the underside of the diaphragm. If successful, these would allow you to be free of the ventilator either part of the time or all of the time.

        (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


        • #5
          Welcome to CareCure, cutieboy86, and best wishes with your therapy, blood pressure stabilization, and (hopefully) evaluation for a phrenic nerve pacer. You'll find a lot of good counsel and support here.
          MS with cervical and thoracic cord lesions

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          • #6
            to Care Cure Community. As we often say here, sorry you had to find us and join us, but we hope you find support and information here that is hard to come by anywhere else. You are amongst fellow spinal cord injured, who have been where you are and a group of rehabilitation nurses and doctors who are willing to help.

            All the best,
            GJ

            Comment


            • #7
              Originally posted by SCI-Nurse View Post
              Look at the top left on the tool bar for "User CP" and click on that. Complete your profile there.

              Are you using compression hose and an abdominal binder to help with your blood pressure?? The more time you spend in bed, the harder it will be to tolerate being upright in your chair. Have you been prescribed any medication (such as Midodrine) to help with your blood pressure.

              You will need to ask about the phrenic nerve pacer. It is often not offered or considered. Ask your SCI physician if you can be evaluated. There are two types on the market...the traditional one that is implanted directly on the phrenic nerve (which controls the diaphragm muscle) through the chest wall, and the newer ones that are implanted laparoscopically through the abdomen directly onto the underside of the diaphragm. If successful, these would allow you to be free of the ventilator either part of the time or all of the time.

              (KLD)
              hi kld.. thanks for the advise... yes i am wearing a abdominal binder to help with the pressure and taking midodrine.. i am hook to a blood pressure machine too for whole day monitoring. i wonder if i am still able to sit up again without any legs because i lost both my legs from the thigh down due to the accident

              ok sure i will ask about the phrenic nerve pacer at the next appointment with the doctor. i also wish i can be at least free of the ventilator for some part of the time... i hate the idea of having to be dependent on a machine the whole day

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              • #8
                hi bonette and gjnl, thanks for the welcome and encouragement... i am sure i will find a lot of support here and help me overcome and get adapted to my new life

                Comment


                • #9
                  Originally posted by cutieboy86 View Post
                  hi kld.. thanks for the advise... yes i am wearing a abdominal binder to help with the pressure and taking midodrine.. i am hook to a blood pressure machine too for whole day monitoring. i wonder if i am still able to sit up again without any legs because i lost both my legs from the thigh down due to the accident
                  Why are you continuously monitoring your blood pressure?? This seems like over-kill and excessive medicalization of your disabilities to me. Are you having a lot of AD without other symptoms?? Blood pressure fluctuations when laying flat in bed that give you symptoms??

                  I assume you have your amputations while you were in rehab. These should have been addressed there, and a custom seating system set up for your needs. If not, you need to go back as an outpatient and get this properly addresses.

                  (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


                  • #10
                    not too sure too but they just hook me to the machine that measure heart beat and blood pressure with the ventilator... so far i am only able to sit up to around 20 degrees only for 15 minutes before my blood pressure drops and felt giddy... i still wearing a halo brace too but will be removing them next week.

                    yup i had my amputations right after the accident at the OT. one of my legs was amputated at the accident spot. my therapist got suggest fixing a pair of prosthetics to help with sitting

                    Comment


                    • #11
                      We rarely get prosthetics for people with SCI with leg amputations as it is very difficult to manage skin issues, and because in the USA most insurances will not cover cosmetic prostheses that are not functional.

                      A customized seating (cushion) system is what you need. Does not wound like you got very good rehab if you were never seated at 90 degrees the whole time you were there. Any chance of going back to a better rehab center as an inpatient to work on this?? 6 months is a very long time to have to be in a halo. The usual is 3 months at the most. I assume you did not have any surgery on your spine for stabilization???

                      (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


                      • #12
                        oh i see then i guess is better not to get a prosthetics.. any idea what kind of cushion system is good to get a rough idea? i have not been able to get up to more than 20 degrees because my blood pressure always drop and get dizzy... i only know i went through 3 op, 2 surgery for the spine and 1 for amputation...

                        my spine were fracture in 4 areas but the worst injury was at the c2-c3

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                        • #13
                          still feeling very useless and angry that i have to meet with an accident and ended up paralyzed neck down and unable to do a single thing.. even breathing i have to depend on a machine i had a great future ahead when i just graduated but all taken away now

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                          • #14
                            A custom molded cushion such as a Ride Cushion would be best for your needs. I assume you have a power chair with power tilt and recline already?? How much midodrine are you taking? Well hydrated before trying to sit up???

                            I would strongly encourage you to try to get re-admitted to a good SCI rehab center for a more aggressive seating program and to deal with your severe orthostatic hypotension. You will have to tolerate being dizzy...go more by symptoms that your blood pressure readings. A normal resting blood pressure for someone like you is around 80-90 systolic.

                            (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


                            • #15
                              ooo i have to go custom mold one cushion for my power chair in order for me to sit in next time once i am able to get into the chair... yes i have a power chair that uses sip and puff system with power tilt and recline... i taking 15mg midodrine and my caregiver always keep me well hydrated as singapore weather is hot and humid.

                              ok i try to check out if there is any other good SCI rehab center as the one i am in is considered one of the best in singapore... not alot of hospital or specialised SCI rehab center here unlike US i will try hard in rehab again especially with sitting up... demoralised

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