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Thread: C1 & C2 Injury

  1. #11
    Oh, how agonizing for all of you! It is so hard when a loved one's condition has to be interpreted. Yes, do keep us posted.

  2. #12
    My sincere sympathies. I have a similar injury as your mom, so it hits very close to home. I don't want to give you false hope, but I was pretty out of it mentally for quite a while before I regained full cognitive function. It's not uncommon with such high injuries. I truly hope things will improve for you all.

  3. #13
    Thank you for your thoughts. The doctors told us that she may be paralyzed below the eyes down. We have a lot of faith and pray that this will not be the case. We know God has great plans for her. We are very religious, but are in agony mainly because we don't want her to suffer and we have to ask ourselves the questions of what would she want. We feel that as long as she has life; it is not our call to make what quality of life one is given. We will love our mom and will always take care of her regardless of her condition. If you are C1-2 quadriplegic, or have a loved one in this condition can you please tell me how you would feel please if you were a C1-2 quadriplegic and below the eyes as well.

    Thank you,
    Gabriela
    Last edited by momsurvive; 10-15-2011 at 03:05 AM.

  4. #14
    Where is she? Has she been seen by a physiatrist? Unless she also has a brain injury that would cause "locked in" syndrome, I don't see how he could decide this. A C1 SCI doesn't cause any facial paralysis or loss of speech by itself. It can result in ventilator dependency and loss of use of the arms and legs. Please request a PM&R consult.

    KLD

  5. #15
    Oh dear, I was so sorry to read about your mom's condition. I can only imagine how difficult this must be for you. I hope you get the answers you seek so you can make the best decisions for her. My heart goes out to you.

  6. #16
    She is currently at LAC/UCI, but when she is more stable Kaiser wants to transfer her to a Kaiser hospital.

    From what I understand the C1/C2 dislocated and got pushed up to her brain which they say might have cause brain damage. They did say that she has good blood circulation going to her brain. She had seizers for about 12 hours and they say that might have caused damage to her brain along with the no oxygen to her brain when the accident first happened and her heart stopped. They did the EEG and they did see that see has brain activity. They also see in the EEG what they say some type of firing going on in her brain, but they don't know if they are seizers still or what it is so they put her on seizer medicine.

    We have only seen that she was able to understand us the 4th day when they took her off all the medications, but her heart rate went down so they put her back on medications and we haven't seen her able to understand us when she opens her eyes. The day she was able to understand us, she had no facial expressions except her eyes. Her tong keeps moving nonstop.

    They say 14 days is a long time for her to have no other movement except her eyes which is why they think she is in "locked in" syndrome.

    She has not been by a Physiatrist yet, but I will ask.

    Thank you,
    Gabriela

  7. #17
    Dear Gabriela,

    I can very much sympathize with your agony!! My Dad was 70 when an old blood vessel injury left him quadriplegic and on a ventilator. We were told he was 'locked in' and told to 'unplug' him. It was agonizing but as a family we strongly believe that God will not give us anything we can't handle and we chose to keep trying and accept him 'as is'. That was nearly 2 years ago...it has been a very, very long struggle, often fighting with the medical system but we finally managed to get his cuff down and he can now talk...what a joy, but we never gave up. Yes he is still paralyzed and still on a ventilator but he is with us and we have some great times. I do not know how things will turn out, but your attitude of loving and supporting her no matter what is the right one. I will add her and your family to my prayers!

    All the best,

    Tracey

  8. #18
    By the way, my Dad is very thankful to be alive (and tells us so) and has seen one grandchild born and is waiting for another so for us it was gratifying to know that we made the right choice for him.

  9. #19
    Quote Originally Posted by momsurvive View Post
    Thank you for your thoughts. The doctors told us that she may be paralyzed below the eyes down. We have a lot of faith and pray that this will not be the case. We know God has great plans for her. We are very religious, but are in agony mainly because we don't want her to suffer and we have to ask ourselves the questions of what would she want. We feel that as long as she has life; it is not our call to make what quality of life one is given. We will love our mom and will always take care of her regardless of her condition. If you are C1-2 quadriplegic, or have a loved one in this condition can you please tell me how you would feel please if you were a C1-2 quadriplegic and below the eyes as well.

    Thank you,
    Gabriela
    Gabriela,

    As a C1-2, the key to me is her brain. Personally, losing the ability to move my arms & legs, and even having a ventilator, that is still a very livable condition to me -- BUT only as long as my brain is ok. And by "brain ok" I mean still having the ability to communicate effectively and also knowing who loved ones are, etc -- that would be a minimum FOR ME PERSONALLY.

    I'm not sure I can or should advise you, but those are my thoughts.

    I would also seek guidance through prayer.

    God bless,

    Bill Miller
    Wheelchair users -- even high-level quads... WANNA BOWL?

    I'm a C1-2 with a legit 255 high bowling game.

    Checkout the below CareCure thread about a new way to bowl!
    http://sci.rutgers.edu/forum/showthread.php?t=87066

  10. #20
    There was not much change this weekend, except her blood pressure improved and the the non-stop moving of her tong is starting to slow down. We also started seeing her feet move sometimes but the doctors continue to tell us they are just reflexes. They are not like fast moves, just slowly. I have seen it happen mainly when many of us are in the room and talking. How can we tell the differences between reflexes and real moves that she is trying to move?

    Kaiser wants to move her to a Kaiser hospital as soon as she is more stable. We are frightened by the the move and also because we know that they will start pressuring us about the quality of life and what is best for her in their eyes. At LAC/UCI they sort of left us alone on this topic because I had a long discussion with them where I told them it was not our decision to end anyone's life or to decide what their quality of life should be and that we would care for her if all she could do was open her eyes.

    Will keep you updated. Thank you for your thoughts and prayers.

    God Bless,
    Gabriela

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