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Thread: No sign of recovery 5wks 6dys. Help!

  1. #1

    No sign of recovery 5wks 6dys. Help!

    Hello everyone from a new member living outside of the US. My 78 year old dad fell in his sitting room on saturday 7th april and bumped his head. He got a c5c6 spinal cord injury (compression and bleeding in his spinal cord the doctor said). He initially, according to the doctor, had 45% power in his arms, and 10 - 15% in his legs. He had trouble breathing because his chest muscles were affected so they put him on a spontaneous ventilator some days after his accident. Two weeks later he had a tracheotomy. Since then, he's had pneumonia and is still battling with septicaemia which isn't under control yet. My mother and sister and I aren't very good lip readers and we have trouble communicating.

    My dad seems really depressed and doesn't seem to have much energy for physio. Tomorrow it will be 6 weeks since his accident and there are no signs of progress. If anything, he's not moving as much as in the first weeks. The doctors are trying to wean him off the ventilator and trach because they say they are worried about him getting more infections. Is it too early yet to say whether he will make any progress? My dad is getting really depressed with these complications and no signs of progress yet. He is 78 and wanted a dignified death or a livable life. At the moment he is bedridden and still dependent on a ventilator and trach and miserable. I don't want to give him false hopes of a little, or some recovery on one hand..... I really need sound advice from those of you more experienced in this forum.

    In case you are wondering about physio: I've been doing a lot of "physio" with him - much more based on Feldenkrais ATM that my dad and I used to study and do together (Awareness Through Movement) and that has seemed to help him to some extent although sometimes he complains about pain when we start off (I put that on the count of initial stiffness). I do that for an hour, he gets around 30 minutes of classical physio and around another hour of back-up physio from by sister who was given a 15 minute in-training from the hospital physio.

    Can anyone help?

  2. #2
    Is your father in a hospital that specializes in trauma or spinal cord injuries? What do they say his actual level of spinal cord injury is (not just the fractures), and degree of completeness (A, B, C, or D)?

    Unfortunately, there is no way to make the cord heal, nor to predict if he will get any neurologic return or not. It can take at least 2 years to know this. At his age, his prognosis is not very good, esp. with the respiratory problems. Does he have any spinal instability? Did he have stabilization surgery? Is he making any progress with the vent weaning? Generally this must wait until pneumonia is resolved, and it can take a lot of work on his part to achieve. If he is not willing to or interested in working at it, it will not be successful.

    Are they doing everything to prevent pressure ulcers? Has he been out of bed? Is he getting OT and PT? Speech pathology? Have they tried him on a Passey-Muir valve to see if he can talk this way?

    (KLD)

  3. #3

    The most I know

    Eternal thanks for answering....
    No, in the country where I live there are no hospitals that specialise in trauma or spinal cord injuries. The doctor has said nothing about his degree of completeness. He only stated the percentages of what he called "power" in his arms and legs that I mentioned in my initial post.
    They said his spine was well-aligned some 4 weeks ago - he was put in traction after a day. They did mention that there might be a need for surgery to fuse his c5 and c6, but because of his respiratory problems, surgery isn't feasible at the moment.
    They have just started attempting to wean him from the ventilator and tracheostomy as I mentioned in my last post, but it is hard work for him even though his pneumonia is resolved. He is still battling with septicaemia though, and for a few days it was under control, went out of control again, and is slowly stabilising this last 3 days, but it is too early to say yet.
    There aren't any bed sores up to now. They tried changing his position so that he isn't on his back all the time, but he complained of pain. He is getting PT but no OT yet. He hasn't been out of bed up to now and is still on the ventilator. 5 days ago, they said they were giving him a "ventilator holiday" and he could cope with 2 hours of it.
    We have ordered a Passey-Muir valve from the US (it isn't currently used in this country) and have talked his doctors about using it. They had agreed to try it out. It hasn't arrived yet, but it would certainly help communication should he wish to try using it. He is getting better at coughing and managing his secretions which is good.
    He seems pretty weak ever since he's been on the respirator, and even more since the pneumonia and septicaemia. Before that, he could wave his arms, even if they were a bit bent at the elbow, and was way more energetic.
    I'm having a hard time deciphering whether it is because he is weak from septicaemia that he isn't trying as hard, or whether it is because he is really depressed, or both. The fact that he cannot communicate with us and hospital staff and that he has been in practical isolation in the intensive care unit with only 2 1/2 hour visits a day from my mother, and sister and myself and with nurses and doctors poking him around for 6 weeks now doesn't help.
    I will try getting more specific answers on Monday when I meet his neurologist.
    Again, thank you so much for responding.

  4. #4
    Is he still in traction? While being on a respirator makes spinal stabilization surgery more difficult, it is not a reason to delay the surgery. If your father is not moved correctly with an unstable fracture, or if it heals wrong, it could make his neurologic condition worse.

    Please ask the neurologist to do the proper exam of your father for his level of injury. This is called the International Standards for Neurological Classification of Spinal Cord Injury (ISNCSCI), formerly called the ASIA exam.

    He must be properly turned. He needs the right kind of therapy to keep his shoulders stretched, and pain medication to manage the common shoulder pain that is preventing this, but a pressure ulcer right now could be a disaster. In addition, turning is necessary for his lungs. See if they have access to a turning bed or mattress if they will not turn him manually. Is he at least on a pressure reducing mattress of some kind?

    Here is a good resource for the physicians on management of the ventilator and weaning. Ask them to read and download this:

    Respiratory Management Following Spinal Cord Injury: A Clinical Practice Guideline

    A speech pathologist could help with a communication program. At least work on a Yes/No communication system with him (usually one eye-blink for YES, two for NO). A communication board can be devised, and while slow for communication, can be quite effective. Here is an example of one, which it is best to make custom for each person (for example, to add "pain" and body parts for your father). To use it, you hold it in front of you, facing your father, and point first to the first line, then the second, and so on, and ask him "yes or no". If he blinks "yes", then you move across the columns the same way until you get to the word or letter he wants (he would blink "yes"). Write down his responses. Get the staff to use it too.

    http://store.lowtechsolutions.org/pr...15118_zoom.jpg

    (KLD)
    Last edited by SCI-Nurse; 05-19-2012 at 12:30 PM.

  5. #5

    More answers

    Thank you for the questions and the material. He was not operated on because as far as I understand, because he has a heart condition, because of his age and because he didn't want one. He was on a strict diet with exercise. He was being closely monitored by the hospital cardiac unit and was doing well with this non-invasive approach. There have (thankfully) been no heart issues since the accident up to now.
    The neurologist said that there are no fractures, only disc damage.
    He is no longer on traction. Traction was only used for some days to stabilize his spine. He is using a neck brace at the moment.
    He is on what is called a "ripple mattress" at the moment to prevent bed sores (is this the same thing as a pressure ulcers?). There are no signs of bed sores up to now. They do move him around manually.
    I will try and find out from the doctor responsible for his weaning what his strategy is on Monday and I will make printout from the material you have suggested to give him.
    I will ask whether a speech pathologist would be appropriate at this stage.
    In this country, we have a health system rather like the UK NHS. It is entirely "free" and financed by taxes and generally works well. The private healthcare sector, in contrast, apart from the "hotel" treatment is pretty terrible. My father in the first week was in one, one of the better ones, and we are experienced enough now to say that public healthcare here is way better. Then again, the population of this country is 1.3 million which makes it difficult to have a national program to cater for problems that people don't get in big numbers. I'm just giving you the general framework so you get an idea of how health system works here. Perhaps spinal cord injuries is one of these health accidents that people do not get in high numbers enough to justify opening up a special unit, but I don't know the figures. The State funds getting people abroad where they can get more specialised operations should they be in need of specialised treatment.
    The information on your site, by the way, has been very, very useful for us to get a better understanding of spinal cord injury. We are very grateful.

  6. #6

    Thank you Ashley

    Hello Ashleigh,
    Many thanks for your concern. I just visited your website and it looks great. I read your story and I really feel connected to what you are going through even though we are kms and kms apart. My father was far more responsive today. He was on a 'ventilator holiday' which just means he breathes on his own for however long he can take it (2 hrs or so at the moment). My mother and I just did Feldenkrais exercises (these are awareness through movement exercises so that you are conscious of the interconnections of muscles when you move). Just seeing the difference in his breathing, and his being conscious of the was his chest muscles are interconnected in the breathing process) was such a joy. I asked him whether he could feel the way his chest participates as we move his shoulders so that he feels the chest muscles work more as he breathes, and he frowned in thought. When I asked him if he could feel his ribs expand, and his lungs take in more air, he thought for a second and nodded. Today was his first sign of active participation in some kind of PT at least. So it's really been a good day.
    My father and I did Feldenkrais 'Awareness Through Movement' sessions once a week for over 2 years together. We really loved it. There's a youtube clip of Amanda Lynne, a woman who has gone through spinal cord injury and became a Feldenkrais instructor after she used it in her rehabilitation. If you are interested, check it out on www.youtube.com/watch?v=1W24lVzYRgY
    Again, many many thanks for your reply and concern. I'm not sure my father is up to air travel yet, but we will keep this in mind for the future.
    Last edited by Malika Devi; 05-20-2012 at 02:10 PM. Reason: mis-spelt Ashleigh's name

  7. #7
    Ventilator weaning for someone with a cervical injury is best done by short and frequent times off the ventilator, not trying to go several hours until he is exhausted. This is a basic principle of exercise physiology, which uses frequent short non-exhausting exercise to build strength in a muscle (the diaphragm).

    Unless your father has a very incomplete injury, at his level, he has no functioning intercostal muscles with which to move his chest wall. He also would not have any abdominal muscles (required for effective coughing). Breathing at this level is done entirely with the diaphragm and accessory muscles. It has been estimated that it therefore takes 9X as much energy for him to breathe now as it did prior to his injury. Respiratory fatigue can cause respiratory failure. A ventilator allows the diaphragm to atrophy, so it must be strengthened to get an effective breathing pattern going.

    Perhaps he is frowning because you are asking him to make movements (of his chest wall) that he cannot perform. Please read the guideline that I linked for your above.

    Please take all efforts to get your father moved ASAP to an appropriate specialty SCI rehabilitation center in Europe or the USA. This of course would require an air ambulance transport, not going on a commercial flight.

    (KLD)

  8. #8
    Quote Originally Posted by Malika Devi View Post
    Hello everyone from a new member living outside of the US. My 78 year old dad fell in his sitting room on saturday 7th april and bumped his head. He got a c5c6 spinal cord injury (compression and bleeding in his spinal cord the doctor said). He initially, according to the doctor, had 45% power in his arms, and 10 - 15% in his legs. He had trouble breathing because his chest muscles were affected so they put him on a spontaneous ventilator some days after his accident. Two weeks later he had a tracheotomy. Since then, he's had pneumonia and is still battling with septicaemia which isn't under control yet. My mother and sister and I aren't very good lip readers and we have trouble communicating.

    My dad seems really depressed and doesn't seem to have much energy for physio. Tomorrow it will be 6 weeks since his accident and there are no signs of progress. If anything, he's not moving as much as in the first weeks. The doctors are trying to wean him off the ventilator and trach because they say they are worried about him getting more infections. Is it too early yet to say whether he will make any progress? My dad is getting really depressed with these complications and no signs of progress yet. He is 78 and wanted a dignified death or a livable life. At the moment he is bedridden and still dependent on a ventilator and trach and miserable. I don't want to give him false hopes of a little, or some recovery on one hand..... I really need sound advice from those of you more experienced in this forum.

    In case you are wondering about physio: I've been doing a lot of "physio" with him - much more based on Feldenkrais ATM that my dad and I used to study and do together (Awareness Through Movement) and that has seemed to help him to some extent although sometimes he complains about pain when we start off (I put that on the count of initial stiffness). I do that for an hour, he gets around 30 minutes of classical physio and around another hour of back-up physio from by sister who was given a 15 minute in-training from the hospital physio.

    Can anyone help?
    Malika,

    First, based on your description, it sounds as if your father has an "incomplete" spinal cord injury. For somebody who has a C5/6 fracture to have 15% of his leg motor function, he is very likely to be ASIA C. For him to be qualified to be ASIA C, he would need to be able to feel some sensation in his anus and move some muscles in his legs. This needs to be confirmed with a rectal examination by the doctor. If he has ASIA C, he is likely to recover walking again.

    Second, a C5/6 fracture should not result in ventilator dependency. He needs to get over his pneumonia. I agree with his doctors to try to wean him off the respirator. It may take a while because his diaphragm is very likely to have undergone atrophy. Atrophy occurs even after several days of being on a ventilator and, the longer he is on the respirator, the more difficult it will be to wean him off. It would also be good if they get him on a tilt table and start getting him upright, a bit at a time (he is likely to feel dizzy). He of course should be receiving physical therapy with range of motion, as well as muscle strengthening exercises for his arms.

    Third, don't be afraid to encourage him to get better, one thing at a time. His first priority is to get off the ventilator. Then, his next priority is to get into a wheelchair and be able to move around. After taht, he needs to start standing. Even though 78 may seem old, there is no reason why he cannot do these things. It is also clear that if he does not try, there will be no recovery. Many people who have been in conditions worse than he has recovered quite a bit of function. He can do it.

    Wise.

  9. #9
    Malika , are you from India ?

  10. #10
    Thank you so much Doctor Wise Young, sci nurse, smashms and lakboy for your responses.

    Doctor Young, your comments are very reassuring and helpful. I will try and find out more about my father's level of "incompleteness" from his doctor.

    I'm not sure what a "tilt table" is, but his bed is being tilted so that he is often in a 45 degrees upwards position, so that he looks as if he is almost sitting rather than lying down.

    Since yesterday, as I said, he seems to have found a will to struggle. He is moving his arms more since yesterday, even when he sleeps, he has started making movements that seem very natural movements, not the kind of spastic movements he had in the first weeks. This morning he insisted that he move his forearms/arms on his own, to show us what he can do on his own, what he has been practising on his own. So that's a start.

    About the septicaemia - it doesn't seem as if whether he moves to a specialised spinal cord unit abroad or not will change the kind of treatment he is getting.

    I will try and find out in more detail what the doctor's strategy is on ventilator weaning. Today, I did not manage to meet him - he was in the operating theatre.

    Dr. Young, many thanks for putting the priorities in a logical order. It is very helpful in terms of knowing what to ask and how to help.

    SCI nurse, thanks for pointing out the weaning procedure. I have printed out the booklet that you suggested and will study it the best I can. I have noted the point about diaphragm atrophy and the need for short and frequent rests from the ventilator. Perhaps that is what his doctor calls the "ventilator holiday"? I will certainly ask for more details about their strategy.

    Lakboy, I'm from Mauritius, an archipelago of islands in the Indian Ocean, not from India, although some of my grandparents' grandparents were originally from India.

    At the moment, we are waiting for the septicaemia to get under control and my father to be off the vent before even contemplating any kind of air travel. The only possible means of air travel would be through commercial flights. We'll have to make do with existing facilities here I'm afraid.

    Again, all of you, thank you all for responding in this time of need.

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