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  1. #1

    Guidance on progress

    My brother had an incomplete spinal cord injury late December of 2018. He had a posterior cervical laminecty c3-6 and part of 7. It has been a year and 3 months since his accident. My brother can walk with a platform walker. It?s not a ?normal? gait but it is mobility. He has gained very little upper body mobility and cannot feed, dress, or bath himself. He has gotten Botox shots in his upper body twice and is stretched to the point of pain 4 times a week. I am not seeing any real OT or any training to help him become more independent. We were initially told his recovery prospect was good (ASIA D) and that his progress would most likely max out at the two year mark. I am concerned his upper body ability has not returned as yet. Am I overreaching or expecting to much at this point? I?d like to see him go back to an inpatient facility like Sheppard, but don?t even know if repeat acute rehab is even an option. Any guidance would be so appreciated. My family is very confused as to his lack of progress. Thank you so much.

  2. #2
    Senior Member Tim C.'s Avatar
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    ASIA D is a great prognosis, as I know science of recovery is anyone's guess. Anyone can go back to rehab. Getting insurance to pay is another story. Demonstrating progress is a good argument for.

  3. #3
    I am assuming from your description that your brother has a Central Cord Syndrome (CCS) incomplete SCI. In this type of injury, there is significantly more weakness/paralysis in the arms than in the legs, and unfortunately, it is common to not get a lot of return in the arms, especially in older people.

    Did your brother go through an inpatient acute rehabilitation program after his initial injury? What is his insurance funding? Does he have an exercise regimen that he can do at home without a therapist? Why was he given Botox injections, and where? Is he followed by a physician like a physiatrist who is expert in SCI rehabilitation and recovery?

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  4. #4

    Guidance on progress 2

    Quote Originally Posted by SCI-Nurse View Post
    I am assuming from your description that your brother has a Central Cord Syndrome (CCS) incomplete SCI. In this type of injury, there is significantly more weakness/paralysis in the arms than in the legs, and unfortunately, it is common to not get a lot of return in the arms, especially in older people.

    Did your brother go through an inpatient acute rehabilitation program after his initial injury? What is his insurance funding? Does he have an exercise regimen that he can do at home without a therapist? Why was he given Botox injections, and where? Is he followed by a physician like a physiatrist who is expert in SCI rehabilitation and recovery?

    (KLD)
    You are correct. My brother 's diagnosis was central cord syndrome. He did go through an acute inpatient rehab which lasted about 21 days (last January) and was then transferred to a sub acute facility for another 3 weeks. He does outpatient PT at the local hospital and pays privately for two therapists to come to his home to work with him. I believe the botox was in his chest area and possibly on his back to help alleviate his tone. He is followed by the surgeon who performed the laminectomy, and I believe a psychiatrist ordered the botox. Do you have any advice as to what else can be done to assist him in gaining any independence? His left arm is stronger than his right, but of course he is right handed. He will have OT coming into his home soon. I suspect they will come 2 or 3 times a week but by the time they get in and settled the appointment is about 25 minutes. Please know I appreciate you taking the time to address my questions.

  5. #5
    Has he not had previous OT? Can he go to a clinic for OT rather than have in-home therapy? Many home care OTs are not very experienced SCI needs, and those for someone with CCS can be especially challenging.

    A psychiatrist or a physiatrist ordered/administered the Botox? Big difference! The former is a mental health professional while the latter is a physician specializing in physical medicine and rehabilitation. Even among physiatrist, not all are expert in SCI/D. Neurosurgeons and neurologists rarely know anything about rehabilitation.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  6. #6
    Quote Originally Posted by SCI-Nurse View Post
    Has he not had previous OT? Can he go to a clinic for OT rather than have in-home therapy? Many home care OTs are not very experienced SCI needs, and those for someone with CCS can be especially challenging.

    A psychiatrist or a physiatrist ordered/administered the Botox? Big difference! The former is a mental health professional while the latter is a physician specializing in physical medicine and rehabilitation. Even among physiatrist, not all are expert in SCI/D. Neurosurgeons and neurologists rarely know anything about rehabilitation.

    (KLD)
    He had OT in the acute facility and in thesub-acute facility. His insurance will only pay for OT at home which I am sure is not sufficient for his needs. The physician specializing in physical medicine ordered the Botox. Is it possible to recover some upper body functioning? Any suggestion would be appreciated.

  7. #7
    How old is your brother?

    Central Cord Syndrome (CCS) is the most common form of incomplete spinal cord injury, and those affected who are older than 60 typically have a poorer prognosis in terms of functional recovery.

    The prognosis for CCS in younger patients is more favorable than older patients. Within a short time, a majority of younger patients recover and regain the ability to ambulate and perform daily living activities. However, in elderly patients the prognosis is not as favorable, with or without surgical intervention.

    https://www.ninds.nih.gov/Disorders/...formation-Page

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  8. #8
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    Sister- General prognoses can be depressing. Many of us learn most of our ADL skills on our own long after leaving rehab. Foremost he needs motivation. If he has some function in his left arm he likely can learn to feed himself. There are hand devices that will clamp onto a spoon and with a delicious bowl of soup in front of him for motivation he can be encouraged to try- over, and over. He's right handed? No, he WAS right-handed. Now he has to develop that left arm. You said you have seen little effort to train him to be independent. No problem- most of us train ourselves. Keep us informed.

    Rather than agonizing over the competence of OT's employed for home visits go to youtube and learn from the experts- us. He and others in the family may be encouraged by a c-5 complete quad with the channel "All Things Able". He has not added to his videos in years because he got on with life but his attitude is infectious. He is not CCS, but he figured out how to live independently (with aides), he works, he owns his home... check him out. https://www.youtube.com/channel/UCJT...7Uss1tkbNNiRMA

    Then 'search' youtube using the term "central cord syndrome rehabilitation". It will take time to find things that can help your brother and he absolutely needs to be involved, but there is more he can do for himself. Count on it.

    I realize it can be very tricky trying to encourage someone who may be depressed, but that is just one more thing to figure out.

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