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Thread: Injured in China-Incomplete C4-C5-C6 SCI

  1. #1

    Injured in China-Incomplete C4-C5-C6 SCI

    My brother had an incomplete C4/C5/C6 injury (worst being C5) in China. He had a surgery in Shanghai 2nd military hospital and now in Ningbo (Ningbo Rehabilitation Hospital) for physical therapy.
    He has sensation in his limbs, but no movement on his legs. He can move front of his arms, wrists and very minimal movement in his hands. Because he is in China and none of us speak the language, we have hard time understanding the doctors. Although he has people that translates, its still not the same as having an english speaking dr explaining you things... It has been 4 weeks since the surgery but we havent seen much improvement. We were also told not to fly him for 6-8 weeks. I know that time is passing and we are just waiting. What are the initial physical therapy routes that doctors recommended for this type of surgery? He is on catheter and im not sure what exactly they are doing to improve his bowel movements, etc. He was also recently transferred to another hospital to be treated for an infection in his lungs. He will be there for 5 days which means no PT during that time. This has been very difficult on everyone, especially since we are not able to communicate with the doctors. I want to be able to give him examples of how a PT is scheduled and done in the US, what are the most critical things we have to follow or look out for, etc...

    Can someone recommend nutritional diet, PT schedule recommendations and share your experiences?

    I was also told by another carecure user that Dr Wise Young has been involved in stem cell research in china and maybe able to recommend dr or hospitals. I would really appreciate if i can get some guidance.

    Thanks

  2. #2
    I will ask Dr. Young to respond. Your brother needs to get to a specialty spinal cord injury rehabilitation program as soon as possible. Are you planning on trying to bring him to the USA?

    (KLD)

  3. #3
    Quote Originally Posted by berdogan View Post
    My brother had an incomplete C4/C5/C6 injury (worst being C5) in China. He had a surgery in Shanghai 2nd military hospital and now in Ningbo (Ningbo Rehabilitation Hospital) for physical therapy.
    He has sensation in his limbs, but no movement on his legs. He can move front of his arms, wrists and very minimal movement in his hands. Because he is in China and none of us speak the language, we have hard time understanding the doctors. Although he has people that translates, its still not the same as having an english speaking dr explaining you things... It has been 4 weeks since the surgery but we havent seen much improvement. We were also told not to fly him for 6-8 weeks. I know that time is passing and we are just waiting. What are the initial physical therapy routes that doctors recommended for this type of surgery? He is on catheter and im not sure what exactly they are doing to improve his bowel movements, etc. He was also recently transferred to another hospital to be treated for an infection in his lungs. He will be there for 5 days which means no PT during that time. This has been very difficult on everyone, especially since we are not able to communicate with the doctors. I want to be able to give him examples of how a PT is scheduled and done in the US, what are the most critical things we have to follow or look out for, etc...

    Can someone recommend nutritional diet, PT schedule recommendations and share your experiences?

    I was also told by another carecure user that Dr Wise Young has been involved in stem cell research in china and maybe able to recommend dr or hospitals. I would really appreciate if i can get some guidance.

    Thanks
    Berdogan,

    I have been to both the Second Military Medical University in Shanghai (presumably the Changhai Hospital) and also the Ningpo Rehabilitation Center. Both are among the best in China with good doctors. You did not say when he was injured but, from the 6-8 weeks restriction period that they are recommending, I presume that he was injured less than 8 weeks ago. This means that he has a lot of recovery still in front of him (recovery usually does not reach a plateau phase until 12 months or later after injury). The fact that he is being treated (presumably pneumonia) for a lung infection is common but suggests that they are not aggressive enough with his respiratory therapy (clearing mucus) from his lung. As his doctors suggest, it is not a good idea to move him at the present, at least not until all his acute and subacute issues are resolved.

    Regarding the best place for him to do rehabilitation, most of the rehabilitation groups in the United States are relatively conservative in their approach but very good at teaching people how to cope with their paralysis, preventing decubiti, bladder and bowel care, getting around in a wheelchair, driving, and other activities of daily living. While some centers are engaged in locomotor training, most have emphasized weight supported treadmill walking several times a week, not sufficient to restore function (in my opinion).

    In China, one group is engaged in intensive locomotor training of their patients: Dr. Zhu Hui at the Tongren Hospital in Kunming. I want to emphasize, however, that intensive intensive locomotor training by itself, while it does improves health and may improve assisted walking in some patients, does not restore voluntary walking. You can find out more about the program here on this site because there is a lot of discussion about it.

    We found recently in Phase II clinical trials that umbilical cord blood mononuclear cell transplants plus intensive locomotor training improves walking in people with chronic complete spinal cord injury. People that received the transplants without intensive locomotor training did not recover walking. We have proposed phase III trials to confirm these results in China, India, Norway, and the United States next year. Your brother may be eligible for these trials.

    In the meantime, he must learn to take care of himself and to keep himself in good health. This is probably best done in a rehabilitation center in the United States, where presumably his family and friends are. There will be therapies that will restore function and independence. I would be glad to answer any questions that he might have.

    Wise.

  4. #4

    Update and Phase III trials

    Dr Young,
    Thank you so much for your quick response. I had a baby couple of weeks ago and just saw your reply.

    My brohter got injured (fell off a wall which he was trying to jump over) on June 12th. His surgery was done on June 16th in Shanghai (Changhai 2nd Military Hospital). He moved to Ningbo in late June and has been at Ningbo Rehabilitation Center since then(except the time he had a lung infection).
    He has lived in Ningbo for the past 7 years but we are originally from Turkey. We are highly considering taking him back to turkey for treatment, where our family lives and can communicate with the doctors. Unfortunatley he doesnt have insurance in US, otherwise i would have preffered bringing him to Houston, where i reside.
    I noticed from one of your presentationes that your father is from Ningbo and you have visited hospitals there many times. Is there a doctor you can recommend us in Ningbo? Although Ningbo Rehabilitation Center is organized with many PT equipment, we have hard time getting feedback from doctors (partially due to language barrier). He is also not able to utilize all of them. There seems to be a shortage in staff with too many patients seeking treatment.

    We are also interested in the Phase III trials you mentioned. How do we apply or qualify for them? I would like to figure it out before my family decides to take my brother to Turkey. Is there a doctor in ningbo who can help us?

    I have his MRI results pre and post surgery as well as hospital reports. He still doesnt have movement on his legs (although he has sensation). He is also trying to improve his arms, but it has been slow.


    I would appreciate any guidance on the Phase III trials in China and a lead for a doctor in Ningbo. Also, can you recommend hospitals or doctors in Turkey for SCI treatment?

    Thank you,
    Bahar
    Berdogan@slb.com


    Quote Originally Posted by Wise Young View Post
    Berdogan,

    I have been to both the Second Military Medical University in Shanghai (presumably the Changhai Hospital) and also the Ningpo Rehabilitation Center. Both are among the best in China with good doctors. You did not say when he was injured but, from the 6-8 weeks restriction period that they are recommending, I presume that he was injured less than 8 weeks ago. This means that he has a lot of recovery still in front of him (recovery usually does not reach a plateau phase until 12 months or later after injury). The fact that he is being treated (presumably pneumonia) for a lung infection is common but suggests that they are not aggressive enough with his respiratory therapy (clearing mucus) from his lung. As his doctors suggest, it is not a good idea to move him at the present, at least not until all his acute and subacute issues are resolved.

    Regarding the best place for him to do rehabilitation, most of the rehabilitation groups in the United States are relatively conservative in their approach but very good at teaching people how to cope with their paralysis, preventing decubiti, bladder and bowel care, getting around in a wheelchair, driving, and other activities of daily living. While some centers are engaged in locomotor training, most have emphasized weight supported treadmill walking several times a week, not sufficient to restore function (in my opinion).

    In China, one group is engaged in intensive locomotor training of their patients: Dr. Zhu Hui at the Tongren Hospital in Kunming. I want to emphasize, however, that intensive intensive locomotor training by itself, while it does improves health and may improve assisted walking in some patients, does not restore voluntary walking. You can find out more about the program here on this site because there is a lot of discussion about it.

    We found recently in Phase II clinical trials that umbilical cord blood mononuclear cell transplants plus intensive locomotor training improves walking in people with chronic complete spinal cord injury. People that received the transplants without intensive locomotor training did not recover walking. We have proposed phase III trials to confirm these results in China, India, Norway, and the United States next year. Your brother may be eligible for these trials.

    In the meantime, he must learn to take care of himself and to keep himself in good health. This is probably best done in a rehabilitation center in the United States, where presumably his family and friends are. There will be therapies that will restore function and independence. I would be glad to answer any questions that he might have.

    Wise.

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