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  • #31
    Originally posted by harberrat View Post
    Teena,
    Yes I did. I am a little new to forums and it is taking me a little bit to find things and move through the forum. I just replied. Took me a bit to figure out what a PM was,ha! ha! sorry.
    Got your PM to me...thanks...at least now you know how it works...

    Take care!

    Teena

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    • #32
      Presently we are waiting for him to have the decompression surgery and were very frustrated when it was put off because either his breathing was not good enough or they could not get time in the operating room. It frustrated us until the surgeon explained that the surgery was not restorative but only preventative to keep from any further damage occuring.Big let down for us all, but surgery is soon and we hope to have him at rehab ASAP. Anyone ever have a similar situation.

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      • #33
        its only been 2 weeks!!...i had a hemangioma burst at c3,c4...was 100% paralyzed, all i could do was blink my eyes at first, vent for 2 months,, was in i.c.u for 2 months , then 2 weeks in heart/lung institute to ween off vent..then inpatient rehab2 months..forgot what home looked like!.......took time and hard work, things came back for me, they say around 1 yr is about the end time for return..bull$&*#!!......it got my ankle flex(foot up)..at 3 yrs..was tested a 0 at 2 1/2 yrs...then boom i was able to .......dr's told my wife at the beginning to expect me to be a quad ....my left arm is 100% normal, left leg bout 80%...right arm, 100%bicep, very weak tricep, hand not good......i can stand with just my left hand holding against a crutch, or kitchen counter....no leg braces!.....in the pool, i can take steps, do squats, etc......sexual function is 100%......bowel- use magic bullet for help..but if i have upset stomach(diahrea coming), which has been rarely, i feel it and go to the toilet.....bladder...i wear external condom cath to go out, but at home, nothing, pee into a urinal jug...i know when i have to go..........maybe too much info, but what im saying is, your 2 weeks in, i know its scarry.....but they said id prob get nothing back!.....stay strong,,he must be strong! though sci's are / have a list of problems.....each is different,, u cant compare to anyone else.....work hard and time will tell.....dont expect too much too soon
        - Rolling Thru Life -

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        • #34
          Great stuff roc21.

          Keep the hope alive harberrat, and pass on this post to your brother. Best wishes to your family. Not saying your brother will improve as much as roc21, but there's always the possibility.
          Originally posted by roc21 View Post
          its only been 2 weeks!!...i had a hemangioma burst at c3,c4...was 100% paralyzed, all i could do was blink my eyes at first, vent for 2 months,, was in i.c.u for 2 months , then 2 weeks in heart/lung institute to ween off vent..then inpatient rehab2 months..forgot what home looked like!.......took time and hard work, things came back for me, they say around 1 yr is about the end time for return..bull$&*#!!......it got my ankle flex(foot up)..at 3 yrs..was tested a 0 at 2 1/2 yrs...then boom i was able to .......dr's told my wife at the beginning to expect me to be a quad ....my left arm is 100% normal, left leg bout 80%...right arm, 100%bicep, very weak tricep, hand not good......i can stand with just my left hand holding against a crutch, or kitchen counter....no leg braces!.....in the pool, i can take steps, do squats, etc......sexual function is 100%......bowel- use magic bullet for help..but if i have upset stomach(diahrea coming), which has been rarely, i feel it and go to the toilet.....bladder...i wear external condom cath to go out, but at home, nothing, pee into a urinal jug...i know when i have to go..........maybe too much info, but what im saying is, your 2 weeks in, i know its scarry.....but they said id prob get nothing back!.....stay strong,,he must be strong! though sci's are / have a list of problems.....each is different,, u cant compare to anyone else.....work hard and time will tell.....dont expect too much too soon
          Please donate a dollar a day at http://justadollarplease.org.
          Copy and paste this message to the bottom of your signature.

          Thanks!

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          • #35
            ty...right,im by no means saying my gains will be yours, or tryin to give to false hope,but just showing an example...each is different....and at 2 weeks in, u havent even begun......
            - Rolling Thru Life -

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            • #36
              Roc21, guess what I was trying to say was that not having the surgery was/ is frustrating. From what I initially read I thought the quicker the surgery would be the less damage that would occur. Didn't understand that the damage had already occured. I was under the impression the sooner he had the surgery the better chance he would have of regaining more movement down the road. Docs now say the surgery is only preventative and not restorative. Guess I was hearing what I wanted instead of what they were saying. But just knowing there is hope for him down the road is enough....so thanks for your post. I will let him read it. I know it will give him hope that there is always a chance.

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              • #37
                harberrat,

                I am glad that you found us. Unfortunately, if you had been one day earlier, I could have told you to come to the W. M. Keck Center on Friday. We normally hold an "Open House" for families with spinal cord injury on the first Friday of every month. Lasting usually from 5-9 pm or later, I usually give an update on the research and then talk whatever people want me to talk about. Of course, everybody these days want to talk about the clinical trials. Because of the "epic snowstorm", we called everybody up and told them not to come, in case they might have trouble getting home. Despite that, about ten people showed up and I talked to people from 3:30p to 9:00 pm on Friday.

                Let me briefly mention the positive side that perhaps you can share with your brother and family. First, a small percentage (10%) of even the most severely injured patients may recover without any experimental therapy. Second, spinal cord injury is indeed a life-threatening condition, with proper care, a vast majority will survive (95%). Third, most people who have C3-C7 injuries have a good chance to come off the ventilator.
                Finally, most experienced scientists in the field believe that therapies that restore function will be available and that it is a matter of time. How long it takes is a function of funding, hard work, and some good luck.

                I highly recommend Kessler.

                Wise.

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                • #38
                  How did the meeting go today?

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                  • #39
                    Hey LindaT,
                    Meeting yesterday was good. He has been on a "high tech" pressure reducing mattress since his arrival. He is also being turned every hours but has developed two small sores which are vigorously being attended to. I spoke to the social worker who has been great, in regards to the Medicare waiver program and she said typically the rehab. has that info. but she will get us the info. she has. An ASIA exam has been done and they say he is a complete C3. Again, very grim outlook given as far as life from here on with the possibilities of infection etc.. I explained to the doctor that we will take the small percentage of recovery and hold on to that, as opposed to the 95% against.Surgery is scheduled for Thursday so far as he is stable. Still unsure at this time but from what the doctors are saying he will need twenty four hour care after rehab.

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                    • #40
                      Praying for your brother!

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                      • #41
                        Dr.Wise Young,
                        Can't tell you how happy I am to hear some good news. I have shared the info. you have given me with my brother and family along with some posts of hope. He is smiling and happy and has a very good attitude. This site has been an absolute blessing and I am grateful everyone is willing to share their insights and stories of hope. Right now that hope is the fuel for the engine my brother needs. Thankyou

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                        • #42
                          Harberatt: Glad your brother's attitude is great. Means so much towards recovery. Here is a link to the NJ Medicaid Waiver program. I found often the rehab's don't give this to you.. have to ask for it. http://www.state.nj.us/humanservices/dds/ohcs/waiver/

                          Also, the NJ Dept of Disability Services should be contacted. The Deputy Director is also a quad. They will be able to assist with recommendations for housing, programs, support groups, etc. http://www.state.nj.us/humanservices...ome/index.html

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                          • #43
                            Thanks Med100, going to familiarize myself with those websites. Lots of info. Do you know what type of care is available if he needs 24 hr.care?

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                            • #44
                              Don't give up. There are so many things in development that are starting to come to trials on human subjects. I am so sorry this happened to your brother.

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                              • #45
                                Hope

                                You are very fortunate to have found CCC so early. Just curious how you did? It took me a long time. These folks are salvation. Make time to visit as often as you can they will always help.
                                Someone said to take care of yourself now too. This is so important. The loss of your Parents, may they rest in peace, I'm sure stll hurts terribly.
                                It was only a matter of days before the hospital Social Worker set up all the disability paperwork for my son's medicare. You should not have to navigate that bridge alone. Ask for help. You will get it.
                                Many frustrations will try to block your mind from hope. Do not give in or up EVER! The wings of Hope have attatched themselves to a worthy man who's Surname is Wise.
                                I wish you health and healing. I suspect your brother is blessed to have you.

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