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Thread: Ten frequently asked questions concerning cure of spinal cord injury

  1. #411
    Quote Originally Posted by vnewjay
    oh, thanks for your relpy.

    How to determine the cells transplanted into the body is safe?

    I mean, the blood vessel will be plugged by the cells ?

    And perhaps patients will be blindness, but in experimental animals is not observed.

    So, I think cell therapy need more experiment for safety.
    I am not sure what you mean by plugging of blood vessels. This would not happen if the cells are injected directly into the spinal cord and not into the blood vessels. There is no risk of blindness that I am aware of.

    In my opinion, the most likely risks of cell transplant to the cord are
    • infection (from a contaminated preparation)
    • abnormal growth or tumor formation by the cells.
    • inflammation from immune rejection or other reactions to the cells.

    Wise.

  2. #412
    Senior Member
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    scipilot,
    32 years is impressive. You don't make it 32 years as an sci getting stressed about cures.

    I'm only 4+ years post and my legs are so atrophied I just can't imagine science coming up with something to fix this. So much has to grow or repair to be considered a cure. Even getting bowel and bladder back would require the repair, coordination and cooperation of so many nerves and muscles.

    There have been some great posts on here that describe the wholistic process to a cure. Time seems to slow down for me when I get too caught up with cures. It's such a double edged sword. The hope for a cure keeps me going but spending too much time reading about potential cures can be depressing because you realize how much needs to happen.

    Power to Wise and those who remain positive.

  3. #413
    Dr. Young, are there any fund raising organizations that exsist to be fraudulant to the finding of the "cure" that you are aware of???
    Last edited by Freedom92; 01-19-2008 at 01:41 PM.
    If I was meant to have wheels under my ass, what the hell are these legs for?
    http://www.facebook.com/profile.php?id=1455040496

  4. #414
    Quote Originally Posted by Wise Young
    I am not sure what you mean by plugging of blood vessels. This would not happen if the cells are injected directly into the spinal cord and not into the blood vessels. There is no risk of blindness that I am aware of. Wise.
    Free cell in the body would not have entered the blood ??

  5. #415
    Quote Originally Posted by Freedom92
    Dr. Young, are there any fund raising organizations that exsist to be fraudulant to the finding of the "cure" that you are aware of???
    Freedom, are you asking where there are any spinal cord injury fundraising organizations that are fraudulent, i.e. saying that they are going to use to the money for spinal cord injury but do not? Yes, there was recently a scandal associated with one organization in St. Louis. Headed by a father of a person with spinal cord injury, the group raised millions of dollars but spent very little of the funds on research. I believe the man committed suicide and it is very sad. There are undoubtedly others.

    In general, people should be careful who they give money to. Universities are usually fairly reliable because they are established and one can get an accounting from them concerning how the money was used. Likewise, large and long-established foundations such as the Christopher and Dana Reeve Foundation, which have a good track record in funding research, can be trusted. But, be careful with small organizations.

    Before you give to an organization, you should check them out carefully. Make sure that they have a tax-exempt status. Search on internet to see if there have been any problems associated with the organization. Post on this site to find out if anybody has had experience with them. Several web sites provide detailed assessments of foundations and their performance.

    Unfortunately, in many third world countries, there is little regulation or oversight of foundations and other charitable organizations. In mainland China, for example (as opposed to Hong Kong), it is difficult or almost impossible to set up a tax-exempt foundation except through government agencies. Be particularly careful about such organizations soliciting money.

    It is one of the reasons why we do encourage people to solicit funds on this site. We cannot vouch for the veracity of any organization and their ability to ensure that the funds are spent as they claim. The few times that people have solicited funds on this site have usually ended with some people feeling misled and others being embarassed.

    Wise.

  6. #416
    Senior Member Leo's Avatar
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    hi walkanotherday,

    the atrophy issue is not as bleak as u think, we atrophy very quickly, i have a close friend and have seen other who by using FES have more bulk in their legs than before accident. this is after 4+ years.

    hang in there, keep studying

    btw, i'm 31 years post and don't stress much about the cure, anger at why it ain't here already drives me,

    rock on
    http://justadollarplease.org/

    2010 SCINet Clinical Trial Support Squad Member

    "You kids and your cures, why back when I was injured they gave us a wheelchair and that's the way it was and we liked it!" Grumpy Old Man

    .."i used to be able to goof around so much because i knew Superman had my back. now all i've got is his example -- and that's gonna have to be enough."

  7. #417
    Quote Originally Posted by vnewjay
    Free cell in the body would not have entered the blood ??
    If the cells are injected into the blood stream, they may occlude the blood vessels. However, if they are transplanted into the spinal cord, they should not enter the blood stream and should not occlude any blood vessels.

    There are three ways in which the cells can be transplanted to the spinal cord. One is to inject the cells intravenously and hope that they will somehow get to the spinal cord and cross the blood brain barrier into the spinal cord. A second approach is to inject the cells into the intrathecal cerebrospinal fluid (this is the fluid bathing the spinal cord) and hope that the cells will migrate from the subarachnoid space into the spinal cord. The third is to inject the cells directly into the spinal cord.

    Over the past five years, we have tried all these methods of getting cells into the spinal cord. In my opinion, administering the cells intravenously gets no or very few cells into the spinal cord. You need many millions of cells and perhaps a few hundred may get in. It is not a good way of getting cells into the spinal cord. This is true even during the acute phase of spinal cord injury when the blood brain barrier is broken and many inflammatory cells are entering the spinal cord from the blood.

    Intrathecal injection is better but it is also quite inefficient. The cells go all over the brain and hang around the subarachnoid space. If the cells are not HLA-matched or immune-incompatible, they may cause inflammation or even meningitis (fever due to inflammation of the the meninges). I am not sure that many of the cells actually will get into the injury site.

    Direct transplantation of the cells into the spinal cord surrounding the injury site is the best, in my opinion. Some surgeons and patients are reluctant to have anesthesia and surgery to expose the spinal cord. For that reason, there has been talk about injecting the cells into the spinal cord under CT guidance, I think that this poses an even greater risk to the spinal cord. This because CT cannot show blood vessels and the risk of producing hemorrhage (bleed) into the spinal cord is significant.

    Last April, we had a workshop in Kunming to discuss the best way to transplant cells into the spinal cord. We reached a consensus that it is best to inject the cells directly into the spinal cord surrounding the injury site under direct visual control. This is the safest and poses the least risk of further damage to the spinal cord.

    Wise.

  8. #418
    Senior Member
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    Hi,
    i am brand new here, matter of fact this is my first real post. i do not have a sci but i am in a wheelchair with a rather rare disease called RSD. (i posted on another forum to ask if i was welcome here and so far the answers were welcome, so i hope i ok to post! lol ) i am sure the doc is aware of this disease, but probably most of you have never heard of it...my children call it Really Stupid Disease, proper name is Reflex Sympathetic Dystrophy. people can get this disease in one region of their body while others, like me, seem to have it all over. it attacks your sympathetic nervous system, muscular system and circulatory system. i have extremely limited ability to stand as the pain is so severe as well as my right leg is atrophied and deformed from the dystrophy. my disease has attacked my entire right side and is currently on the move over to the left. i have had mirrored symptoms on the left for quite sometime but now they are truly manifesting. rsd is very painful...a chronic pain condition that is only masked with strong narcotics which leave me as a mushbrain, so i have opted to forgo the meds and learn to deal with the pain because i cant deal with spending my life in a drug induced fog.

    many of the 10 points outlined here pertain to my condition too. one of the major problems with rsd is that any surgical procedure can cause the disease to attack the surgical site. no one knows how you get rsd, no one knows why and no one really knows how to treat it and there is no cure. sadly, no real research is being done either because there are not enough patients who suffer from it to use research dollars on this disease.

    the reason i am posting here, is that on the very day i had my last doctors appointment, there was a segment on Good Morning America about a nerve graft to aid paralysis patients. a surgery had been done on a stroke victim and they were reporting on the surgery and the hopes for some manner of recovery of use of his body. this grafting was done with hair. i went to GMA to try to post the link and the video is still up...

    http://abcnews.go.com/search?searcht...om%20hair&type=

    you will want to click on the video of 12/19/2007---Reversing Paralysis from Stroke.

    I was so excited about this new surgery as i was hoping this nerve grafting might be a breakthrough for rsd. i could barely wait for my doc to enter the examing room! i started to tell him and he listened intently and said, i am sorry, of all the things that might be possible for you, this is definitely not one of them. reason being they have to cut nerves to do this and that would make rsd just go bizerk and would be even worse than it is now if that is possible. i have been in my wheelchair for 12 years, so i guess i can stay here a few years longer until someone decides this is a good disease to try to cure.

    however, they do think this is a possible breakthrough for paralysis. now, i do not want to get anyones hopes up for disappointment, but my doc says this is not the first surgery of this type done and he does think it could hold promise for people with sci. and i need to qualify this with his saying there is still much much research to be done.

    i do think that anything that is done that has any amount of success is grounds for hope. i am sure dr. young has heard about this and can offer far more information about this than this video can provide. while this is not and will never be an option for me, if this surgery is successful with this patient, then maybe it will be a new path for those of you who have sci. i just thought you all may be interested in hearing of the procedure.

  9. #419
    Hi Dr Young,

    I recall you explaining the hows/ whys a walking quad becomes weak after walking. It happens to me often, as one member told me, "I use up all my physically currency" and have to sit down for a good lengh of time to recover. I can not find the post and hope I put the question is the correct place. When you have the chance can you please provide a brief explanation
    Thanks,
    Pam

  10. #420
    Hello, spinky. You are a wonderful writer. Give me a little time to respond. I have a lot on my plate right now and it may take me several days. Wise.

    Quote Originally Posted by spinky88
    Hi,
    i am brand new here, matter of fact this is my first real post. i do not have a sci but i am in a wheelchair with a rather rare disease called RSD. (i posted on another forum to ask if i was welcome here and so far the answers were welcome, so i hope i ok to post! lol ) i am sure the doc is aware of this disease, but probably most of you have never heard of it...my children call it Really Stupid Disease, proper name is Reflex Sympathetic Dystrophy. people can get this disease in one region of their body while others, like me, seem to have it all over. it attacks your sympathetic nervous system, muscular system and circulatory system. i have extremely limited ability to stand as the pain is so severe as well as my right leg is atrophied and deformed from the dystrophy. my disease has attacked my entire right side and is currently on the move over to the left. i have had mirrored symptoms on the left for quite sometime but now they are truly manifesting. rsd is very painful...a chronic pain condition that is only masked with strong narcotics which leave me as a mushbrain, so i have opted to forgo the meds and learn to deal with the pain because i cant deal with spending my life in a drug induced fog.

    many of the 10 points outlined here pertain to my condition too. one of the major problems with rsd is that any surgical procedure can cause the disease to attack the surgical site. no one knows how you get rsd, no one knows why and no one really knows how to treat it and there is no cure. sadly, no real research is being done either because there are not enough patients who suffer from it to use research dollars on this disease.

    the reason i am posting here, is that on the very day i had my last doctors appointment, there was a segment on Good Morning America about a nerve graft to aid paralysis patients. a surgery had been done on a stroke victim and they were reporting on the surgery and the hopes for some manner of recovery of use of his body. this grafting was done with hair. i went to GMA to try to post the link and the video is still up...

    http://abcnews.go.com/search?searcht...om%20hair&type=

    you will want to click on the video of 12/19/2007---Reversing Paralysis from Stroke.

    I was so excited about this new surgery as i was hoping this nerve grafting might be a breakthrough for rsd. i could barely wait for my doc to enter the examing room! i started to tell him and he listened intently and said, i am sorry, of all the things that might be possible for you, this is definitely not one of them. reason being they have to cut nerves to do this and that would make rsd just go bizerk and would be even worse than it is now if that is possible. i have been in my wheelchair for 12 years, so i guess i can stay here a few years longer until someone decides this is a good disease to try to cure.

    however, they do think this is a possible breakthrough for paralysis. now, i do not want to get anyones hopes up for disappointment, but my doc says this is not the first surgery of this type done and he does think it could hold promise for people with sci. and i need to qualify this with his saying there is still much much research to be done.

    i do think that anything that is done that has any amount of success is grounds for hope. i am sure dr. young has heard about this and can offer far more information about this than this video can provide. while this is not and will never be an option for me, if this surgery is successful with this patient, then maybe it will be a new path for those of you who have sci. i just thought you all may be interested in hearing of the procedure.

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