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Thread: Complete SCI C4-5

  1. #1

    Complete SCI C4-5

    Hi,
    My friend's son is 20 years old and was injured Saturday with a complete C3-4 SCI. (I wrote C4-5 by mistake, sorry)


    He is still heavily sedated and hasn't been officially told yet about his injury. But his Mom thinks he might realize what is wrong. He does sometimes wake up and try to get the tubes out of his mouth and seems angry.
    I guess I'm just looking for any advice you may have from any perspective. Whether you are a person with an SCI (especially if you need a ventilator) or a family member of a person with an SCI.
    I have been staying with my friend at the hospital to just be with her but I just don't know if there's anything more I could do to help.
    It's hard to know what to say.
    Thank you so much in advance for anything you can tell me.
    Deb
    Last edited by debcays; 12-02-2005 at 08:59 AM.

  2. #2
    Hi Deb,

    I shuddered reading your post. I am also C4/C5 complete--5 years post now. I was vent dependent at first for about 5 weeks. This will be a rollercoaster of emotions and events, but things will gradually get better. Really, you all need to take things one day at a time right now. If you wish to talk to someone directly with a similar injury, please feel free to contact me at sue@unite2fightparalysis.org . Also, have you heard of the activated macrophage clinical trial being conducted in the US by Proneuron? There is a 14 day post injury window of opportunity to participate, so you need to pounce on researching this option immediately if you are interested. http://proneuron.com

    Hang in there!
    Susan

  3. #3
    Thank you so much for responding. You are right, we are all really freaking out right now. I'm trying to calm down so I can be of more real help.
    I e-mailed that study. But they said he cannot be vent dependent. When I go to the hospital today, I am going to find out if they can get him off the vent soon enough. We are in Allentown and from what I read, the nearest center is in Newark, NJ.
    It's very encouraging to see that you were on a vent for 5 weeks and then got off it.
    My friend Tania isn't really very familiar with using the internet, but I would like to try to show her how to get on this site. I greatly appreciate your offer to e mail.
    I have to go now to get to the hospital, but again thank you!!
    Talk to you later,
    Deb

  4. #4
    Thank you for being such a good friend. When something like this happens to a family, you need all the friends you can get. The most important thing is to continue to be there for your friend and her family. Too often "friends" disappear during a crisis, and with one like this, many are never seen again.

    Be sure that your friend is getting some rest. Offer to sit with her son so she can take a nap or come in late. She can't afford to get sick herself, and won't be thinking straight to make decisions if she is too tired. Offer to run errands for her that are needed too and don't let her be polite and say it is not needed. Can you help her with stuff for the holidays?

    It is common for someone to need fairly heavy sedation on a ventilator as they often "fight" the ventilator. The fact that he has enough arm function to try to pull out the tube is encouraging actually. Getting him weaned off the ventilator may take some time, and requires a team that really knows how to do this with someone with a SCI. Many ICUs are not familar with this. You might want to get a copy of the clinical practice guidelines for Respiratory Management following Spinal Cord Injury from the Consortium for Spinal Cord Injury and give copies to the nurses and physicians. This is a new publication, and it includes information about proper weaning practices. You can download a copy for $3.00 here:

    http://www.pva.org/cgi-bin/pvastore/products.cgi?id=1

    Try to get your friend on-line so that she can ask questions too. You may want to print out materials from this site (check the articles on the home page by Dr. Young).

    You might also want to help her set up a website about her son's injury at the site below. It helps to distribute the website information for all those friends and family who want updates, and will decrease her need to constantly have to return phone calls telling everyone the same information over and over. Friends can also leave messages for him and the family on the site:

    http://www.caringbridge.org/

    Help them research the most appropriate place for her son to get his further care. It is critical that they get him moved to a specialized spinal cord injury center where he can get specialty care and appropriate rehabilitation. For example, in your area I would look at Kessler in New Jersey or Magee in Philadelphia. Don't just accept the local small rehab program....many times it is better to go further away to get the specialized care he will need.

    (KLD)

  5. #5
    Thank you very much for the info.
    I just got back from the hospital and saw this.
    By the way, I made a huge mistake! It's C3-4 not C4-5. Is that a very different prognosis?
    Deb

  6. #6
    Senior Member mj23's Avatar
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    Maybe dont tell him that he aint going to walk. My parents told the doctors to not tell me that I wasnt going to walk. 6 months after my accident I was able to walk. I dont know if this will help.

  7. #7
    Senior Member taj2002's Avatar
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    debcays,

    My husband is a C3-C4 complete, 3.5 years post injury. He was on a vent for 7 months. I was told "barring a miracle, your husband will never get off the vent." Guess I got a miracle. It seems like it is way too early to make guesstimates of his ultimate return of function. My husband really got very little return and has no function/sensation below the tops of his shoulders. He has no arm function at all. He still has a trach because he can not cough or manage his secretions effectively. Also to complicate all this, one of his vocal cords is paralyzed.

    I would try to remain as hopeful as possible. At this early stage, drs can not really determine this young man's ultimate outcome. A true C3/C4 injury is devastating but not a death sentence. He needs a strong advocate and a top notch rehab program. Like others have said, I would research any options for clinical trials. Find out all you can and push to get him anything and everything you can. I fought like a dog for my husband but it ultimately led to getting him weaned, getting great rehab etc. With my husband's injury, he was hospitalized for a total of 9 months, 7 of which were spent at SCI rehab in Craig Hospital in Colorado. Your friend and her son have a long road ahead, but I would not give up hope. You can private topic me if you want any more specific info about my husband's C3/C4 injury.

    Thinking of you and this family,
    Trish

  8. #8

    Yes - try to enroll him to ProNeuron

    I agree with Suzan M try ProNeuron,
    now almost 12 months after my 20yo was injured (c5-c6 complete) at least a little pain is lifted that I tried everything in my power at that time .. medical staff did not want to listen to us, they were a major road block in getting my son to the study ...

  9. #9
    I'm sorry this happened. Please tell your friend we are here to help, and thank you for being the kind of friend that wants to help.

    Everybody has given good advice. I would recommend you print the article linked below for your friend.

    http://carecure.org/index.php?page=v...3@AcuteSCI.htm

    Good luck and let us know if we can help.

  10. #10
    Thank you so much for all your replies. When I saw her yesterday, I told her about this and she was really excited. She's still iffy about getting on the internet. Her son was in college and had started setting her up to get on the internet on Thanksgiving break I think the day before the accident.
    But hopefully soon we will be able to do it so she can talk to you guys.

    His arms don't move, he was trying to push the stuff out with his mouth.
    He is scheduled for a trach. on Friday (next week).
    I talked to her about the macrophage treatment and apparently the neurosurgeon is supposed to talk about it with her. I think they might do it! And they can do it at the hospital he's in now. (Lehigh Valley Hospital)
    They want him to go to Good Shepherd Rehab in Allentown.
    He had surgery on Tuesday to put a piece of bone or something that bone will grow onto at C4, and they need to wait for that to heal before doing the trach.

    Well, Thanks again, I'll check in later!

    Deb

    PS one good thing...he smiled at his Mom yesterday when she went in!
    Last edited by debcays; 12-02-2005 at 09:00 AM.

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