Wise Young
09-01-2003, 01:00 AM
Hi,
Everybody I am writing to all of you from Turkiye. I am brother of a SCI patient (age 34), the accident has been happened in 07.31.2003 while jumping to sea. The level of injury is from including C2 to C6 including C6. He had several problems like breathing problems he was connected to ventilator but for last 4 days he had give up ventilator and breathe by his own. he also had sense and movement in his shoulder. According to our Doctors information the most important part of injury is in C5 level. And also they said it is too early to categorized my brothers injury according to ASIA Categorization also we did not know whether he is complete or incomplete (I have to say that I did not know the meaning of incomplete and complete) all for now what I know is only he had no cut off but severe damage in his Spinal Cord. Why I am writing to you this is I did not know what to do. Please can you give me informations and advises to me what to do. Should I expect too much about my brothers recovery. Can he walk again. It is very hard for me to write this kind of message, but I am in a very terrible condition and very unhappy.
Sorry for my English but please I am waiting for quick responses you can also send me your e-mails to the below addresse.
koray.abaci@btc.com.tr
Thank you very much....
mka,
I am sorry to hear of your brother but am glad to hear that he has regained independent respiration.
He is one month after injury and the ASIA Classification should have been ascertained within 72 hours. The difference between ASIA A and the other categories is the presence of anal sensation and voluntary anal sphincter contraction. This can be determined by anybody, including you.
While an ASIA A classification suggests a severe injury, I want to caution you, however, that none of the classifications can predict recovery or lack of recovery with greater than 80% accuracy. For this reason, I believe the classification of patients should not change the therapy that your brother receives.
I hope that your brother received a drug called methylprednisolone (30 mg/kg bolus followed by 5.4 mg/kg for 23 hours) started within 8 hours after injury. This treatment has been reported to improve the recovery of function by about 20%. If he did not get it, there is nothing that you can do about it and there are some doctors who believe that this drug is not helpful.
I assume that your brother had surgery decompressing his spinal cord (ensuring that there is no further compression). The neurosurgeons in Turkey are very good and I think that they are very aware of the need for early decompression.
Your brother should be getting intensive daily physical therapy. Now that he is off the respirator, he needs to be up in a chair part of the time during the day. If not, they need to begin putting him into progressively more vertical position. The reason is that complete bedrest leads to complications such as decubiti, urinary tract infections, and other problems.
There are several groups around the world that are beginning to put patients with spinal cord injury into intensive ambulatory training within months after spinal cord injury. The Balchrist
Rehabilitation Center in Zurich, for example, is one such place. They are doing this mostly for patients who are ASIA B or C, however. This is still experimental.
Your brother is too late to qualify for clinical trial on activated macrophage transplants that is being conducted in Israel and Brussels. That trial has a limit of 2 weeks. I don't think he would have qualified anyway because his spinal cord injury level is too high. Likewise, he is too late to qualify for the trial at Purdue University, assessing the effects of alternating electrical currents on the spinal cord within 2 weeks after injury.
Most of the other experimental therapies around the world are for chronic spinal cord injury. So, what he should focus on now is getting as much recovery as possible. Almost everybody recovers some function after spinal cord injury. He needs to maximize that recovery by engaging in intensive training. If he moves from a current C5 to C6 or even C7, this would make an enormous difference in his quality of life.
Recovery takes a long time. Especially in people with severe injuries, recovery may continue for as long as 2 year or more. Christopher Reeve, for example, is still getting some function back even though he is more than 7 years after injury.
There is much that your brother needs to learn about his body and how to take care of himself. If he stays at C5, he needs to learn how to communicate with a computer via voice-driven software because this will allow him to go into internet and communicate with people. There is a need to arrange his life, family, and house/apartment so that he can be accomodated.
I believe that there will be therapies that will restore function to people with spinal cord injury. Your brother should know that there are manys scientists and people who are working hard to make this happen. In the meantime, he must be disciplined for himself and his family, work hard to get as much functional recovery as possible.
Please feel free to ask further question. I am sure that others will offer their advice as well. Many people on this forum have had the experience of spinal cord injury.
Wise.
Everybody I am writing to all of you from Turkiye. I am brother of a SCI patient (age 34), the accident has been happened in 07.31.2003 while jumping to sea. The level of injury is from including C2 to C6 including C6. He had several problems like breathing problems he was connected to ventilator but for last 4 days he had give up ventilator and breathe by his own. he also had sense and movement in his shoulder. According to our Doctors information the most important part of injury is in C5 level. And also they said it is too early to categorized my brothers injury according to ASIA Categorization also we did not know whether he is complete or incomplete (I have to say that I did not know the meaning of incomplete and complete) all for now what I know is only he had no cut off but severe damage in his Spinal Cord. Why I am writing to you this is I did not know what to do. Please can you give me informations and advises to me what to do. Should I expect too much about my brothers recovery. Can he walk again. It is very hard for me to write this kind of message, but I am in a very terrible condition and very unhappy.
Sorry for my English but please I am waiting for quick responses you can also send me your e-mails to the below addresse.
koray.abaci@btc.com.tr
Thank you very much....
mka,
I am sorry to hear of your brother but am glad to hear that he has regained independent respiration.
He is one month after injury and the ASIA Classification should have been ascertained within 72 hours. The difference between ASIA A and the other categories is the presence of anal sensation and voluntary anal sphincter contraction. This can be determined by anybody, including you.
While an ASIA A classification suggests a severe injury, I want to caution you, however, that none of the classifications can predict recovery or lack of recovery with greater than 80% accuracy. For this reason, I believe the classification of patients should not change the therapy that your brother receives.
I hope that your brother received a drug called methylprednisolone (30 mg/kg bolus followed by 5.4 mg/kg for 23 hours) started within 8 hours after injury. This treatment has been reported to improve the recovery of function by about 20%. If he did not get it, there is nothing that you can do about it and there are some doctors who believe that this drug is not helpful.
I assume that your brother had surgery decompressing his spinal cord (ensuring that there is no further compression). The neurosurgeons in Turkey are very good and I think that they are very aware of the need for early decompression.
Your brother should be getting intensive daily physical therapy. Now that he is off the respirator, he needs to be up in a chair part of the time during the day. If not, they need to begin putting him into progressively more vertical position. The reason is that complete bedrest leads to complications such as decubiti, urinary tract infections, and other problems.
There are several groups around the world that are beginning to put patients with spinal cord injury into intensive ambulatory training within months after spinal cord injury. The Balchrist
Rehabilitation Center in Zurich, for example, is one such place. They are doing this mostly for patients who are ASIA B or C, however. This is still experimental.
Your brother is too late to qualify for clinical trial on activated macrophage transplants that is being conducted in Israel and Brussels. That trial has a limit of 2 weeks. I don't think he would have qualified anyway because his spinal cord injury level is too high. Likewise, he is too late to qualify for the trial at Purdue University, assessing the effects of alternating electrical currents on the spinal cord within 2 weeks after injury.
Most of the other experimental therapies around the world are for chronic spinal cord injury. So, what he should focus on now is getting as much recovery as possible. Almost everybody recovers some function after spinal cord injury. He needs to maximize that recovery by engaging in intensive training. If he moves from a current C5 to C6 or even C7, this would make an enormous difference in his quality of life.
Recovery takes a long time. Especially in people with severe injuries, recovery may continue for as long as 2 year or more. Christopher Reeve, for example, is still getting some function back even though he is more than 7 years after injury.
There is much that your brother needs to learn about his body and how to take care of himself. If he stays at C5, he needs to learn how to communicate with a computer via voice-driven software because this will allow him to go into internet and communicate with people. There is a need to arrange his life, family, and house/apartment so that he can be accomodated.
I believe that there will be therapies that will restore function to people with spinal cord injury. Your brother should know that there are manys scientists and people who are working hard to make this happen. In the meantime, he must be disciplined for himself and his family, work hard to get as much functional recovery as possible.
Please feel free to ask further question. I am sure that others will offer their advice as well. Many people on this forum have had the experience of spinal cord injury.
Wise.