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Thread: New SCI patient - lots of questions

  1. #1

    New SCI patient - lots of questions

    Hello Everyone --

    I stumbled across this message board and breathed a sigh of relief. I know that anyone who reads this will most likely respond.

    I am 38, married, with two children (12) and (8). My life (including my husband and my children's lives) have changed dramatically, and I can not imagine (and don't wont to think about) SCI patients who do not have a family like mine to help.

    My 78 year old father fell off his bed four (4) months ago and incurred C5-6 incomplete injury - quadraplegic (he has wrist--it sounds so silly but oh, --we are so greatful for wrist). He under went C4-5-6-7 bone fusion surgery and was in hospital/rehab for three months.

    He has been home for one month. During the last four months, I have learned more about SCI than I ever dreamed I would know.

    Each day I visit my father and try to do what ever it is that I can do to "help"; whether it is clipping toe nails, shaving, setting up for teeth brushing, stretching legs, helping with his "bridging" exercises and PT, folding laundry, taking my Mother shopping, trying to get help with medical bills, meeting with ramp contractors, cooking a meal, etc., etc., etc.

    The most difficult thing that I have to deal with is the "why" questions that my father delivers each day..........

    Why.....does it hurt so much?
    Why.....do my legs feel like they are in water?
    Why.....do my legs feel like they are freezing?
    Why.....do my hands and feet swell?
    Why.....do my wrists ache?
    Why.....does my bladder feel so spasmatic?
    Why.....don't I feel like eating?
    How.....long will it hurt?
    Will....I ever walk again?

    ........all of these questions are presented to the many doctors that we see, and none are ever answered.

    I know that I am a rookie --- and that is okay, because someday, I will be able to relay all this newly found information onto someone like me, who needs it.

    Any information that anyone can relay onto me would be soooooo very much appreciated!!

    I am reaching out to those who I know will help me, because you have experienced all of these things first hand. I know that this message is vague--I am not really looking for any "specific" thing -- I will appreciate any info that anyone responds with.

    Thank you --
    A daughter who loves her father very much,

    LeeAnn

  2. #2
    my injury is c6-7 complete, but i'll try to answer some of your questions...i'm sure the SCI nurse will be more helpful.

    Why.....do my legs feel like they are in water?
    Why.....do my legs feel like they are freezing?
    this may be due to phantom pains

    Why.....do my hands and feet swell?
    poor circulation and water retention

    Why.....don't I feel like eating?
    loss of hunger sensation

    Will....I ever walk again?
    everyone's injury is different, but an incomplete has better chances of recovering, not necessarily walking though.

    i'm not really sure how to answer the others though, but I hope this helps. Good luck to you and your dad. you sound like a very caring daughter.

    Even if your body cannot move, you can still think and meditate ~Dalai Lama~

  3. #3
    I am glad you are reaching out to folks who have dealt with many of the same issues have listed.
    I will try to give some possible answers to them as well.
    With a spinal cord injury, there is swelling with the injury at the site of the injury, this lasts anywhere from a couple of months to a year. as the injury is incomplete, it is as if the nerves have been asleep and are now waking up. There may be tingling, achiness, pain. Will this get better? For some folks it gets better with no intervention with time, for others, there are medications to decrease the tingling, "nerve pain".
    Your Dad's body is getting used to all sorts of new feelings.
    Hands/feet swell as they are in a dependent or down position.
    Don't feel like eating as he is burning fewer calories or maybe is depressed.
    For the pain- see above.
    Bladder spasmatic- unsure of what you mean- does he have incontinent voids?
    Walking- always a tough call with incomplete injuries, one for the MDs.

    Keep asking questions, we are here to provide answers/support as we can.

    JM

  4. #4
    Junior Member
    Join Date
    Mar 2004
    Location
    NJ, USA
    Posts
    2
    LeeAnn,
    I'm in a similar position to you, and I wondered how things had gone for your Dad/you in the past few months? My brother in law sustained a C4/C5 in January and is still in ICU. He's 38 with three kids and is getting really frustrated. He's always been VERY active and now cannot move anything but his head. How is your Dad emotionally? How is everyone around him? Do you have any tips for the time frame we're in? Any thoughts you have might just reassure me and the family, and we can pass it on to him. Thanks!
    Bean

  5. #5
    LeeAnn and cbean - I am so glad that you have both found this site. A spinal cord injury, as you are learning, is a life-changing event for the entire family and those who surround you and your loved ones with their love and support. I know that this has been a most difficult time for all.

    I hope by now that you have found the excellent article written by Dr. Young, the medical administrator of this site. His article, Acute SCI will answer many of the questions that you have asked. A SCI is a most unique injury for no two persons' injuries will be manifested in the same way.

    LeeAnn - In addition to the very understandable explanations in Dr. Young's article, the alterations in sensation and the pain that your father is experiencing are the result of the nerves' responses to the injury they have sustained. For more explanation of the pain and its management, go to University of Alabama, Spain Rehab Center: Pain and Its Management

    If your Dad is having spasms of the bladder, that is a manageable symptom. Does he have a urologist who is familiar with SCI? Has he had any bladder studies, including urodynamics, done? These studies will help the doctor determine the amount of neurologic deficit that his bladder has incurred. There are medications for the bladder spasticity. One also needs to remember that, as noted earlier in the SCI Nurse response, there is the potential for changes during the first 6 months post-injury period known as spinal shock. As spinal shock resolves itself and healing occurs, there may be some changes in bladder function. So it would be important to ask for a urological exam, around this time frame, to be sure that he is on the correct bladder management program.

    For both of you, there are some very good online resources that may be helpful. Please go to NSCIA - new injury This is the National SCI Associaton information packet on 'new injuries'; it will link you in to important information. You should also feel free to call the NSCIA Resource Center, 1-800-962-9629, to talk with one of their Resource Center staff persons about any of the questions that your families are struggling with.

    Three additional resources include:
    1) University of Alabama, Spain Rehab Center: UAB InfoSheets Scroll through their 21 topics.
    2) Craig Hospital: Educational brochures Scroll through these very practical brochures, written for the consumer
    3) University of Miami: PoinTIS Scroll through both the Patient and Provide Handbooks. The latter explains the importance of an overall treatment plan, tests of which one should be aware, services that should be provided by different members of the health care team, etc.

    Lastly, let me say, research shows that it takes 3 - 5 years, under the best of circumstances, for a person to adjust (psychologically) to this life-changing event. It is quite normal for the first year, in particular, to be very emotionally labile .

    I hope that some of these resources and comments will be helpful to you and your families. CRF

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