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Old 07-23-2011, 03:09 PM   #71
Jawaid
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Dear Wise as we know u will be starting trial for lumbosacral injuries in near future so will u be using only source of neural stem cells or along with some regenerative therapy? I mean some combination therapy with stem cells?

If combination then which therapy will u like to do? Can u tell plz
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Old 07-25-2011, 06:34 PM   #72
Lyerly
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Originally Posted by Wise Young
Finally, flaccidity (complete loss of muscle tone) usually results in marked atrophy of muscles. For a long time, clinicians thought that denervated muscles could not be restored. However, a group in Vienna has reported that very intense electrical stimulation of muscle can not only maintain but restore denervated muscles.

I know that the reversal of flaccid paralysis sounds daunting but I think that we will be surprised by how flexible the spinal cord is.

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Dr. Young,

I 2.5 yrs post T11/12 and mostly flaccid as well. I have been using Swiss stim consistently over the last 1.5 yrs and I feel as well as my doctors at Kennedy Krieger that I would have a lot more atrophy if I had not been using it.

Is it possibly to have a mix of spastic and flaccid? I have a very spastic bladder. I was excited when I read about this Austria Stim a few mnths ago. I have been in communication with the dealer and developer of this Stim as well as a few european carecure members who are using it. I believe it is approved for use in 10 countries but not the USA. I think with a lot of paperwork and cooperation from the developer and your doctors it is possible to obtain it despite it not being approved.

I have been trying to make this happen but not having much success. My guess is possible liability concerns. From the material and studies I have read the sooner after injury you start using this type he better so I am very anxious to get this and put it to use. Very frustrating to know that there is something out there that could benefit you and all the other lower motor neuron folks but you can't get your hands on it. I was talking to the folks at Shepherd about this and they view lower motor nueron injuries as over looked and under served. Any advice on how to change things starting with his Austrian unit. Thanks in advance.

Last edited by Wise Young; 07-25-2011 at 07:20 PM. Reason: edited to fix the quotation.
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Old 07-25-2011, 07:24 PM   #73
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Dr. Young,

I 2.5 yrs post T11/12 and mostly flaccid as well. I have been using Swiss stim consistently over the last 1.5 yrs and I feel as well as my doctors at Kennedy Krieger that I would have a lot more atrophy if I had not been using it.

Is it possibly to have a mix of spastic and flaccid? I have a very spastic bladder. I was excited when I read about this Austria Stim a few mnths ago. I have been in communication with the dealer and developer of this Stim as well as a few european carecure members who are using it. I believe it is approved for use in 10 countries but not the USA. I think with a lot of paperwork and cooperation from the developer and your doctors it is possible to obtain it despite it not being approved.

I have been trying to make this happen but not having much success. My guess is possible liability concerns. From the material and studies I have read the sooner after injury you start using this type he better so I am very anxious to get this and put it to use. Very frustrating to know that there is something out there that could benefit you and all the other lower motor neuron folks but you can't get your hands on it. I was talking to the folks at Shepherd about this and they view lower motor nueron injuries as over looked and under served. Any advice on how to change things starting with his Austrian unit. Thanks in advance.
Yes, one can have a mixture of flaccidity and spasticity. It depends on the level of the gray matter injury.

In my opinion, the discovery that high current surface stimulation can restore flaccid muscles was a very important discovery and this stimulator is an important clinical tool. The company should apply to the US FDA for approval of this device. If they have not done so, they need to get the process going. If they don't have the resources to do so, they can license the product to a company such as Medtronics to do so. In the meantime, the FDA will provide compassionate use approval for individual cases.

Wise.
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Old 07-25-2011, 10:41 PM   #74
Lyerly
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Yes, one can have a mixture of flaccidity and spasticity. It depends on the level of the gray matter injury.

In my opinion, the discovery that high current surface stimulation can restore flaccid muscles was a very important discovery and this stimulator is an important clinical tool. The company should apply to the US FDA for approval of this device. If they have not done so, they need to get the process going. If they don't have the resources to do so, they can license the product to a company such as Medtronics to do so. In the meantime, the FDA will provide compassionate use approval for individual cases.

Wise.
Thanks as always for the quick response. I will use the info you gave me to see what I can do and let others know what I am able to do.
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Old 07-26-2011, 04:29 PM   #75
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i stumbled upon this site by accident. and im glad i did. this place is great.
very nice video. this is the first ive heard of this. are there any other videos based on these trials and procedures? thanks.
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Old 07-28-2011, 06:07 AM   #76
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Hi,
So many good news but..?
My question is simple ,
When we will be able to speak to the patients who were part of those research trial and hear their opinion??
When we will be able to see videos of those patients before and after the trial? All of us can just by looking at the person in the wheelchair determine what is the level of the injury. So we will be able to see also all the improvement.
Thank you


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Old 07-28-2011, 11:46 AM   #77
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good question
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Old 07-29-2011, 09:56 PM   #78
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if the hong kong trials dont show any changes, will that hault the US trials? are the trials the exact same?
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Old 07-29-2011, 10:22 PM   #79
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if the hong kong trials dont show any changes, will that hault the US trials? are the trials the exact same?
lets hope the Hong Kong trials do go well. Dr Young has said that if one trial doesn't show any positive changes that they would then move on to another trials.
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Old 07-29-2011, 11:09 PM   #80
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The trials in Hong Kong have already indicated that the surgery can be safely carried out to expose the spinal cord and that 4- and 8-µliter injections of umbilical cord blood mononuclear cells can be safely made into the spinal and lithium can be safely given to people with chronic spinal cord injury. Although phase 2 trials are not powered (have sufficient patient numbers) to show small improvements of neurological function), if it causes large improvements in function, we should be able to see it in these trials.

We will be applying to the U.S. trial this fall, as soon as the safety data from the transplants become available from the trials in Hong Kong and Kunming. The trials in the United States, while not identical to the UCBMC trials done in China, will be testing the same therapies. So, if the therapies are not safe in China or we don't see a trend for improvement, we may go to another therapy in 2012. That is one of the reasons why we are holding consensus conferences on the best therapies to test next.

Wise.
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