Stem cell therapy to do or not to do?

[borries]

My brother had a C6-7 incomplete (we hope) sci sunday a week ago, I have heard a lot about stem cell treatment and researched this on the net. Got hold of two US based medical companies that does the research and treatment one does it in Barbados, the other in Dominican republic. Has anyone been for this treatment, could you please let me know what your feelings is on this, is there improvement in condition after treatment?

Your replies will be appreciated.

[Wise Young]

My brother had a C6-7 incomplete (we hope) sci sunday a week ago, I have heard a lot about stem cell treatment and researched this on the net. Got hold of two US based medical companies that does the research and treatment one does it in Barbados, the other in Dominican republic. Has anyone been for this treatment, could you please let me know what your feelings is on this, is there improvement in condition after treatment?

Your replies will be appreciated.

Borries,

I strongly recommend against going to the clinics in Barbados and Dominican Republic. Neither of them are offering therapies that have been shown to be of benefit in spinal cord injury. They are just infusing umbilical cord blood cells without doing any chemotherapy to create niches for cells to engraft. It is not clear that they are using well-matched umbilical cord blood units. So, the treatments are very unlikely to do anything except waste your time and money.

Wise.

[borries]

Hi Wise

According to them they use fetal stem cells, I am no expert in the process but I can give you their website it is www.regenmd.com. According to them there is chances of improvement if the injury is recent and incomplete. Please have a look at the site when you get a chance. they also said that he might qualify as part of the research. From what I gathered there is not significant risk for this treatment. I would like to know if it is worth the try or not

Thanks for your reply

[jk jr]

Do not do.

I am a c5 c6 quadriplegic complete. I have heard many horror stories from people doing related treatments out of the US. I have been living with sci for 5 years. I would love to walk again but I tell you, a cure is not too far away here in the US. Check out the Reeve-Irvine center and the accomplishments they have made. There is hope only if we can get the right guy or girl in office and get the world to take a stand on this issue. It will pursue. Just be patient. Save your money for when it is available here in the U.S.

[kkmay]

Don't bother and be patient.

[borries]

thanks

After your "negative" (according to me) feedback I sent a mail to the company in Barbados to ask them for SCI specific testimonials as there were not any on their site, however they have it as one of the "diseases" that can be cured. To my suprize I reveived a call from them to inform me that up to date they have only treated 2 patients, none of them with significant results. Thanks for the eye opener.

[Pinkshel]

www.newlifestemcell.com

[Curt Leatherbee]

The reason they want new incomplete injuries is because he probabley is going to get some return even without any treatments. The return he was going to get anyway could be used by them under their testimonials if he had the treatment and improved. Save your money.

[Wise Young]

According to them they use fetal stem cells, I am no expert in the process but I can give you their website it is www.regenmd.com. According to them there is chances of improvement if the injury is recent and incomplete. Please have a look at the site when you get a chance. they also said that he might qualify as part of the research. From what I gathered there is not significant risk for this treatment. I would like to know if it is worth the try or not

Thanks for your reply

borries, you are correct. I had spoken to the CEO of the company at Barbados last year. They are using fetal cells obtained from aborted fetuses in Russia. There is not much information about the cells and how they are going to be transplanting the cells. I don't think that you should assume that there is no risk.

Wise.

[kkmay]

The WISE one has spoken twice. It's your life but don't be a fool and listen to us and not do it.

[borries]

His first day awake after surgery

Riaan had his surgery this morning, a three hour procedure where they used artificial bone for the fusion. This afternoon at three was the first time that we could speak to him and explain what is going on. The last ten days has been a total lapse of time for him. He took it suprisingly well even making a few jokes no and then. He still has a lot of fluids in the lungs that they are trying to get rid of. It has been confirmed by the Neurosurgeon that it is a C6-7 complete injury. There goes all hope for stemcells in any event. At present he has feeling in his hands but does not seem to able to move them. Will that improve? He also asked whether he will be able to get back feeling in hes legs which I told him that I dont thinks so. The one thing that made me laugh is that he said i must stop smoking because there came a lot of "shit" out of his lungs. thanks for all your help thus far. Will most definitaley put him on here as soon as he can. They reckon that he will be out of ICU soon, he is already off the ventilator, from there he will be going straight to rehab.

Thanks again

[Buck503]

Riaan had his surgery this morning, a three hour procedure where they used artificial bone for the fusion. This afternoon at three was the first time that we could speak to him and explain what is going on. The last ten days has been a total lapse of time for him. He took it suprisingly well even making a few jokes no and then. He still has a lot of fluids in the lungs that they are trying to get rid of. It has been confirmed by the Neurosurgeon that it is a C6-7 complete injury. There goes all hope for stemcells in any event. At present he has feeling in his hands but does not seem to able to move them. Will that improve? He also asked whether he will be able to get back feeling in hes legs which I told him that I dont thinks so. The one thing that made me laugh is that he said i must stop smoking because there came a lot of "shit" out of his lungs. thanks for all your help thus far. Will most definitaley put him on here as soon as he can. They reckon that he will be out of ICU soon, he is already off the ventilator, from there he will be going straight to rehab.

Thanks again

Just because he is a complete injury does not mean that there is
no hope for a stem cell therapy in the future. Most of us are
complete injuries.

You should really study what stem cell research is going on and
what spinal cord injury is before you make such assumptions.

In my opinion, it is still to early to tell how much function he will
get back.

[JeffH]

It has been confirmed by the Neurosurgeon that it is a C6-7 complete injury. There goes all hope for stemcells in any event.

At this stage the 'complete' diagnosis doesn't really mean too much. I was diagnosed as a c-7 complete but regained sensation to T-1 within a few weeks and now at 10 months have muscle return in my trunk and upper legs.
Truth is that nobody knows what sort of return he might have or when, diagnosis notwithstanding.
Patience is a bitch but also paramount.
As for hope for a cure, stem cells or otherwise, that story is not over yet either, there are many posts in the cure forum debating if and when but the consensus is generally positive.

At present he has feeling in his hands but does not seem to able to move them. Will that improve?

Maybe. Mine did. Right hand is still weak but continues to improve. Again, faith and patience are needed.
I believe that electrical stimulation in rehab helped my right hand return.

Jeff

[borries]

update

Hi everyone,

Thanks for your replies, just a quick update of what is happening to Riaan. He is still in ICU, today it will be three weeks since the accident. Feels like a lifetime, on Thursday he was very critical with his
lungs, so bad that they asked the whole family to go to hospital... They subsequently have put him on his stomach, to be able to absorb the oxygen better. It is difficult to explain but apparently he has some thick fluid in his lungs, they drain every two hours but it doesn't go away. If they turn him on his back then it goes bad again. I don't know how long they can keep him on his tummy as it influences the other daily body functions again. They still keep him sedated as he breathes against the ventilator when concious, yet his lungs are not strong enough to coach him into not fighting it. Out of the three weeks in ICU it was only three visits that he has been able to "speak" to us. If anyone has any suggestions please let me know.

Thanks

Corne'

[betheny]

Does he have any other injuries? There's not much you can do while he is in ICU. This is time to be looking into rehabs for him. Improvement is not guaranteed but it is far from unlikely. Please read this article, it will help answer some of your questions.

http:///index.php?page=viewarticle&a...3@AcuteSCI.htm

You will have lots of questions. Good job finding us so soon. If we can help, please feel free to ask.