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C5 injury, 3 weeks out

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    #46
    Please, do not get too discouraged.

    First, it is not correct for the doctors to say that this is likely "as good as it gets" since he hasn't had more improvement in his legs yet. It is still very very early, and certainly much will change over the next year(s), so you have to tell him not to give up yet.

    Also, discharge dates are often flexible. Ask them what the current goals are for his rehab, how they will decide if the discharge date is extended, and is there any chance of re-admission if he regains more function in his legs. Also, start asking about what the next stage of rehab will be - is there a "day rehab" program that he will go to next? Usually this means an outpatient program where he can still work with trained therapists several hours a day, multiple days a week. The end of inpatient rehabilitation is not the end of therapy!!! It is not the end of recovery!!!

    Remember, the most important thing your daughter can do at this point is just be there for him. Just her presence alone will make a world of difference. Keep telling him to try to squeeze that butt, move that leg, wiggle that toe.

    It is also very very common to get depressed. Who wouldn't? This is normal. My father also got very depressed the weeks before he was discharged, and his mood often fluctuated wildly. Sometimes he just needed to cry and have someone there to hold him. But sometimes he didn't want anyone to touch him.... I am hoping that a psychiatrist/neuropsychologist is part of the team that is following your daughter's boyfriend. Many patients will be put on anti-depressants during these early weeks, and this can be a very good thing. You don't want to have him give up on trying because he is depressed. Ask his doctors about this. Support groups/talking to other patients can also be very therapeutic and as much as your daughter can facilitate this would be very good. No one understands the issues/frustrations better then another patient. As this site can attest.

    Yes, life is very precious. You never know what will happen.

    Consequently, you can't give up hope. There is always a chance tomorrow may be better. But he has to fight for it. Tell your daughter to tell him that she wont let him give up!

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      #47
      Originally posted by CASPER
      Here is an update; not a good one, but anyway:

      The doctors say they are going to send him home in 5 to 6 weeks. They say that since he has no return in his legs, then this is probably as good as it gets. I have a hard time accepting that at this point, as some of you who have been through this say it could take a year or more. It will be 3 months on the 11th. So confused.

      Neeedless to say, his mindset is not so good. He told my daughter not to come visit anymore, that he is not the same person he was. Pretty devastating. She loves him with all of her heart, and hopefully he will not push her away. Funny how you think your life is all planned out, and everything changes in an instant.


      Anyway, advice anyone?
      Find out in your area if there might be a state spinal cord injury resource center that may have some folks who are post SCI that mentor new injuries. I have a friend here in Florida who is post SCI many years & I know that he does some mentoring to others who are newly injured.
      If your here in Florida contact the Florida Spinal Cord Injury Resource Center @ Tampa General Hospital in the Rehab Center building here in Tampa Florida. I don't know what state you live in. You might also find out before he is discharged to where ever he's going to live if your state has a Brain & Spinal Cord Injury Program & a spinal cord injury registry that keeps track of folks who reside in the state that have incurred a spinal cord injury or disease.
      I wish your daughters boyfriend the best on his road to recovery.

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        #48
        Hey everyone,

        Just a quick update and a few questions:

        He is now home. He didn't get an extension on inpatient, so now we start a new chapter. His attitude seems pretty good considering all that has happened , and we are so grateful for that. He is not able to transfer on his own because he had so many setbacks that he probably did not get to accomplish as much in rehab as they had hoped. He still cannot use his hands to do much; he can flex his fingers, but no ability to grip thus far.

        We would like some feedback from others in this situation. It will be 4 months on the 12th since this happened, and his injury is at C5. Where were you at this point, and how far have you come since? Some have said they really started to recover after they got home and got some real rest; have any of you had that experience, or was there much more recovery at all after you came home? What did you do to keep yourself motivated? Did you have sensation and function start returning after this long? I know I'm asking a lot of questions and that each person is different, but we still like to hear from all of you that have been through this, because we have no idea what is going through his mind because we have not been through this ourselves.

        Thanks again everyone.

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          #49
          Well, back in the hospital. A terrible UTI set up, causing fever and low blood pressure. He went in on Thanksgiving, but hopefully will get out today or tomorrow.

          I guess I personally am at a low point. We have only been in this situation for 5 months on the 12th of this month, but the diagnosis he was given is concerning all of us. We want to hope, but since he was diagnosed complete we don't know how much to expect. I'm not sure that he is complete. He still knows if his hips are crooked and if he wants his feet moved to a more comfortable position. He also says he can tell somewhat if he needs to have a bowel movement. He has not had any accidents because of this. Any knowledge I have about SCI I've gained from this forum, so please help us out everybody! Is a complete diagnosis forever, or can it change? If it doesn't change, what can we expect recovery wise from a C5 injury? Please give us some insight.

          Comment


            #50
            Originally posted by CASPER View Post
            Neeedless to say, his mindset is not so good. He told my daughter not to come visit anymore, that he is not the same person he was. Pretty devastating. She loves him with all of her heart, and hopefully he will not push her away. Funny how you think your life is all planned out, and everything changes in an instant.
            These newly-injured stories are gut wrenching because I can attest to how it felt to be unable to feel your legs or see yourself first time in the mirror after an accident. Time is his ally at this point as healing takes a long time. The biggest thing he can do over the next 2 years is to cope with what's happened while making the best of his time. Whether the coping be through exercise, family, school, work, or hobbies, anything that keeps him optimistic about the future is crucial at this point.

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              #51
              I was injured at C5 and now function at C7/8 and live an active life. It takes a long time, his injury is very fresh.

              Comment


                #52
                Hey everyone,

                Just another update. It may be time to move to another forum since it's been almost seven months now, but I'll start here.

                Life seems to be going pretty well for the most part. Some days are better than others, but hey, that's normal even for able bodied people, lol. There has been great return in his arms, hands are getting better. The pressure ulcer is healing pretty well with the wound vac, so hopefully some good pt can get started soon. The OT that is coming to his home is wonderful; she really is pushing for him to get the assistance he needs. His next big goal is to get out of the power chair and into a regular chair. Hopefully that will come soon.

                We still wonder about the progress everyone has at this point after a C5 injury. We just still don't know if lots more progress is to come, should we know more at 6 1/2 months as far as possible return, we just don't know

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                  #53
                  Glad things are improving. Sounds like almost something new almost everyday. Could take years and years. You just don't know. Some get return in 5 years. I know one quad took him 9 years to be like , you never knew he had a SCI. Now he's a nurse helping SCI people.
                  oh well

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                    #54
                    Casper....my son is C6/7 and 6 mos. post. He is getting stronger. He gains more on the sensation but no motor function. He has 2 OT and 2 PT per week and uses the standing frame up to 1 hour 3-4 times/week. He uses the power and manual chair. When he watches TV, we normally transfer him to Lazy boy.
                    I know it is very slow progress. Family support is very important. My son is 21 y.o. and we often have his friends over or let him go out with his friends.

                    Comment


                      #55
                      Originally posted by cary's love View Post
                      Is his injury complete or incomplete? I am not familiar with the rehab they are sending him to. My fiance was at Shepherd Center in Atlanta- they were WONDERFUL!!! Everyone is right about getting him to a facility such as this and out of the hospital ASAP. The sooner you can, the better off he will be. I strongly believe in an agressive rehab. They had classes for my fiance from about 9 until 4 every day. Pt, OT, treadmill training, wieghts in the gym. Once he started the treadmill training he really progressed very quickly. It has been my experience that hospital PT people are SO busy and really don't have the kind of time to devote to an SCI person. Good luck to your daughter's bf and please keep us posted!
                      Hi Cary.
                      I was reading your thread and I was wondering what type of progress did your fiance see due to the treadmill training. Thanks.

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                        #56
                        Hi Casper, my son is 21 and he is a C5 incomplete, post 7 mos. He has been home since Oct 24. His therapist says he is doing a good job. Since he has been home he has learned to transition from the wheel chair to the bed pretty much by himself. I do still have to help pull his legs up. We don't get as much therapy as we would like since he has no insurance but anything is better than nothing. Justin can eat and drink with his left hand. We are working on getting his right hand stronger. He can raise his left leg up and his right a little. In my eyes he has come a long way from when he first went to rehab from the hospital and he couldn't even feed himself. In the beginning he had some feeling in his feet no he says he doesn't really feel anything from ankles down. I'm hoping that will come back. Just keep praying and working hard. A positive attitude goes a long way.

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