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Thread: Recent SCI

  1. #1

    Recent SCI

    Hello all,

    Bill Fertig with the NSCIA Resource Center sent me a link to this sight this morning in a reply to me seeking information.

    I’ve read many postings and I am very thankful that this sight exists. The support and kindness with this community is amazing.

    A very dear friend of mine, and my significant other’s sister was in a car accident last Friday. She is currently in the CCU at the Alaska Regional Hospital. I spent the weekend with her and her family, but had to return to work today. I’m trying to research and find as much information as possible, quickly. I understand that prompt and correct care for SCI is very important.

    Lisa swerved to miss killing a porcupine while in route to a business meeting and lost control of her car. She was in a multiple roll over and suffered an injury to her neck. I’m not positive, but I believe her injury was to the C4 / C5 vertebra. The surgeon had to remove one disk that was shoved up against her spinal cord, fused two together somehow and placed some steel rods / plates to her neck vertebra somehow. It was quite hectic and I just didn’t ask all the questions I probably should have and don’t have many details concerning her surgery. I was more concerned with the family and making sure that the ‘little’ things were being taken care of and making sure they rested and ate from time to time.

    The surgeon was very busy and on call for two separate hospitals and he just hasn’t been very available for questions. I guess that he is one of three neurologists in this area. Fortunately, one of the nurses in the hospital saw Lisa’s name and has been at the family’s side ever since. She told us that we need to get her out of there ASAP, and into a SCI rehab center. Another friend in our small town went to Craig Hospital and recommended that we send Lisa there. The surgeon has made a few calls today and the Craig staff is to meet this Wednesday to review Lisa’s application for admission. We do not know if she will be admitted or not.

    I do not know if Lisa’s condition is classifies as complete or incomplete at this time, and the surgeon has not told us one way or the other. He just continues to tell the family to not get too hopeful, but to not give up hope either. I think he’s just preparing everyone for the possibility of her being completely paralyzed. She can not move anything but her head and can sorta shrug her shoulders. She can feel touch on her body and identify where the touch is, but again, I do not know if anyone has done any sort of pin prick tests.

    Lisa is in extremely good physical condition, she’s 34, and prior to this, was never sitting still. She’s probably an ADD candidate if anything. It’s very painful to see her this way knowing how active she is (was). She was to run a marathon Sunday and had a good chance of winning it. She is a fighter and if shear will is all that it will take to gain full recovery, then she will get it. I’ve never met someone with as much drive as her. I told her to not give up, and she told me she wasn’t going to. As soon as the ventilator was pulled after surgery she was pissed off because she couldn’t make her body roll her out of bed and get her cloths on. She’s very eager and constantly telling everyone to get her the hell out of there and into rehab. And then there’s times when she breaks down and starts to cry and says that she’s scared. This is all just too much to digest right now, for everyone. To see this woman in this way is simply heartbreaking.

    I’m soliciting input at this point from those of you who have been through this to what I should be doing for her care and recovery. She is a city employee with very good heath benefits and the accident is workman’s comp related. Are there other rehab centers that we should be calling in case Craig will not admit her?

    Thank you in advance for your input.

    ……..mike

  2. #2
    Hi Mike and Welcome.

    As many will say... sorry you had to find us.

    I feel an extra connection with your story as I lived in Anchorage from 1969-1978. My husband suffered a C3/4 incomplete SCI Oct 11, 2003. It is great that you found your way here. I did not find it for almost a year after, my husbands injury... and I was really looking!!!

    I also used to live in Denver, and worked at a hospital that referred patients to Craig. It was then and still is a great place. The only issue I can see is the distance from family. Support from family and friends is critical. I have no alternative suggestions, I am sure SCI nurse can provide recommendations closer to home. I don't know if there is anything in Seattle. Is there no model sci facility in Anchorage SCI nurse?

    My husband was unable to move or feel anything immediately after his injury and again immediately after his surgery which was similar in description to what you have described. He is now walking, albeit tenuously, but of course suffers from many issues related to his SCI, bladder, blood clots, impaired proprioception etc. There is a lot of room for hope. But... having said that as you will hear more than once I am sure, SCI's are like snowflakes, no two are alike. My husband was also very active and in good physical condition when he was injured. I believe that this helped him in recovery, cause it is just damn hard. You have to work and work and then work some more. And it is often painful and results can seem very illusive. And some times... hard work doesn't do any good at all. It all depends on how much of the spinal cord has not been damaged and is still capable of communicating with the brain and vice versa.

    I will add your friend to my prayers as I am sure many here will do. SCI is a tough road.
    KittiM

  3. #3
    It is very positive that she is so quickly off the ventilator. It will be critical that she get good respiratory care, including quad coughing and IPPB to keep her lungs healthy at this critical time, as it is important to not get back on ventilator if possible.

    Craig is an excellent hospital, and if she were on a long term ventilator, I would strongly encourage you to try that. On the other hand, is is a LONG way from home. It will be difficult for family to visit, and discharge planning can be a challenge.

    I would also suggest looking into the SCI rehabilitation program at the University of Washington in Seattle. They have a very good reputation.

    I assume your friend is not a military veteran. If she is, then let us know as there are some excellent VA SCI Centers as well.

    (KLD)

  4. #4
    Senior Member
    Join Date
    Jun 2005
    Location
    Denver, Colorado
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    Craig is excellent... my husband did his rehab there in 2005 for a T11 complete injury... we live in Denver... if she does go to Craig, please let us know and we would be happy to visit with her...

    My thoughts and prayers are with her and your family...


    Sieg

  5. #5
    Thank you for the replies.

    I also think Seattle would be better for the family. Not so much for convenience, but airline costs. Anchorage is 300 miles away from our home town, so ANY travel is inconvenient here. And if you have to get on a plan, the significance of its destination begins to dwindle. Alaska does not have a SCI rehab center that I am aware of, so we really have no choice but go stateside.

    Sarah cornered the surgeon last night and asked him point blank if Lisa’s injury was complete or incomplete. He told her that it is complete. I don’t quite understand this seeing how she can feel touch. I thought if you could feel touch, that the SCI was considered incomplete. Can someone point me to a better description to these classifications?

    thanks again for the input and as time permits, I'll post back status updates.

  6. #6
    It's also very far away, but there is the Shepherd center in Atlanta. She would be best served in a hospital that specializes in SCI, be it Craig or Shepherd. There might be others, but these are the only 2 that I am aware of.

    She sounds incomplete to me, but there is so much that she will need to learn that I would try to get her moved into a SCI rehab asap.

  7. #7
    Senior Member
    Join Date
    May 2006
    Location
    Somewhere in the Rocky Mountains
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    Mike,

    So sorry to hear of Lisa's accident. This is a wonderful site with tons of information and will be a place for Lisa to find support.

    I have no other comments than to say DOCTORS HAVE BEEN WRONG IN THE PAST!!!!! Be prepared but in the same sense Don't give up hope. It is good that Lisa is healthy and is a fighter because she will need that attitude to reach her full potential.

    It is a good sign as the nurse said that she is off the vent in such a short time.......Just keep your spirits up. Things will always get harder before they get better and as I said before. Doctors have been wrong in the past. They were about me.

    Good luck!!!! Lisa is in my thoughts.
    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

  8. #8
    the family is very fortunate to have a great friend like you Mike. getting her in a good rehab center immediately is crucial. trying to keep family and friends around her now is also very important in hopes of keeping her spirits up.. sounds like you have a good grip already. keep reading and keep asking as much as you can think of. good luck to all of you guys.





    Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

    If you ain't laughing, you ain't living, baby. Carlos Mencia

  9. #9
    What type of specialty is this doctor? Did he tell you both a level of injury and ASIA class (such as C4, ASIA A or C3 ASIA B)?? This is the correct way to describe the injury level and degree of completeness.

    You can see more about this in the article by Dr. Young here:

    http://sci.rutgers.edu/index.php?pag...nalLevels.html

    In order to be called incomplete sensory (ASIA B) she must have sensation in the area immediately around her anus. Does she have this? Without this, she does not meet the strict ASIA criteria for incomplete at this time. This does not necessarily mean that this will remain this way, and the fact that she has some sensation in other areas at this point is a good predictor for getting back some more.

    Also, please read this article:

    http://sci.rutgers.edu/index.php?pag...3@AcuteSCI.htm

    (KLD)

  10. #10
    Thanks again for the replies. They are appreciated. And thanks for the links to the articles too. They are very informative and clear up quite a few questions that have been nagging at me.

    To answer you questions SCI-Nurse, I don’t have a clue what type of quals this doctor has. He’s supposed to be a neurologist, but that’s all I know. If there is any correlation between his competence and his bed side manner….well I shouldn’t comment on that publicly. It does seam quite odd to me that he makes little to no attempt to visit with the family. They see him no more than once per day, and some days they do not see him at all. And when they do, he is abrupt and does not seam to want to talk to them or answer questions. Frankly, I’m quite frustrated with the doctor. At times like this, people need to at least ‘see’ and ‘talk’ to the experts. Whether it is productive or not, they really do need this and they are not getting it. I’m just thankful that they have a few good nurses who care about the wellbeing of the family as a whole.

    An interesting thing happened yesterday though. They have moved Lisa out of the CCU into the Ortho unit, and a rehab nurse is visiting her a couple times a day. The therapist pulled Sarah to the side and told her that Lisa’s injury is not complete and that ‘they’ frequently disagree with the doctor’s assessment. The nurse told her to not get her hopes up too high, but to remain positive. Just that little bit of ‘positive’ communication turned a hopeless gut wrenching feeling into one of hope.

    Sarah also asked the nurses in charge if Lisa was administered that steroid post accident drip, but they can not tell by looking at her charts. I am suspecting that she did not get this treatment. Where the accident occurred is in a remote area. It took an hour for the EMT’s get to her location, more time to cut her out of the car, and then another hour and a half transporting her to the closest medical facility. She was then treated and sent to the Anchorage hospital by helicopter. All in all, about 6 hours to get her to the hospital from the time of the accident. And then it took them a couple hours to get through the MRI. Her surgery was about 15 hours after the accident.

    We are supposed to hear back today by 1230 if Lisa will be admitted to Craig or not. If not, I’ll be on the phone with the rest of these model rehab centers. We have a jet lined up to transport her, and just need to know where to send it. This waiting game is not a fun one.

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