Stem cell advancement in China

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
Locked
Kianas Dad
Posts: 29
Joined: Tue Dec 12, 2006 3:20 pm

Stem cell advancement in China

Post by Kianas Dad »

I was reading in another forum that they are now using stem cells to repair nerves in China. I know Christopher has posted topics about the research that they are doing here as well as in England, but as I understand it China is further along than both of us in trials. They have already started human trials and from what I understand are getting positive results. That brings me to my question;

How does anyone go about researching trials in China and trying to become a part of their focus group? Do insurance’s cover out of country procedures? Are they using adult/embryonic/nasal cells? Does anyone else have information about Chinas trials and results pertaining to SCI or BPI injuries?

I know with the FDA and the litigious system we live in, we are usually at the tail end of implementing procedures as common practice… At this point I would be willing to consider footing the bill to go to China if it meant a possibility of better recovery. Thanks for you time and input,

Roger
katep
Posts: 1240
Joined: Mon Mar 29, 2004 3:20 pm

Re: Stem cell advancement in China

Post by katep »

I would be incredibly amazed if you could make this happen. I think your best shot would be to contact the researchers directly and inquire. China is still not truly an open country, and you would need their help to get the appropriate permissions to do this.

Kate
User avatar
marieke
Posts: 1627
Joined: Fri Apr 01, 2005 6:00 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI
no external rotation against gravity, can only go to 90 degree fwd flexion, no hand-to-mouth
1 surgery at age 14 (latissimus dorsi transfer). In 2004, at age 28 I was struck with Transverse Myelitis which paralyzed me from the chest down. I recovered movement to my right leg, but need a KAFO to walk on my left leg. I became an RN in 2008.
Location: Montreal, Qc, Canada
Contact:

Re: Stem cell advancement in China

Post by marieke »

I saw a documentary on TV here in Canada about 2 sisters who were paralyzed in a car accident who went to China to get this done. They had to raise a TON of money to be able to do this and the doctors and PTs here who very weary of them going through with it as it is not proven safe yet. They were originally supposed to do it at one place and had to back out as there was no good proof that it would be good or safe and finally found another one that they deemd accetable... Be VERY careful with what you do.
Marieke Dufresne RN
34, LOBPI
http://nurse-to-be08.blogspot.com
Kianas Dad
Posts: 29
Joined: Tue Dec 12, 2006 3:20 pm

Re: Stem cell advancement in China

Post by Kianas Dad »

Trying to find out more, I came across this website;

http://www.stemcellschina.com/

Amazing stuff... I am still curious if they have done anything with BPI injuries though...
User avatar
Christopher
Posts: 845
Joined: Wed Jun 18, 2003 10:09 pm
Injury Description, Date, extent, surgical intervention etc: Date of Injury: 12/15/02

Level of Injury:
-dominant side C5, C6, & C7 avulsed. C8 & T1 stretched & crushed

BPI Related Surgeries:
-2 Intercostal nerves grafted to Biceps muscle,
-Free-Gracilis muscle transfer to Biceps Region innervated with 2 Intercostal nerves grafts.
-2 Sural nerves harvested from both Calves for nerve grafting.
-Partial Ulnar nerve grafted to Long Triceps.
-Uninjured C7 Hemi-Contralateral cross-over to Deltoid muscle.
-Wrist flexor tendon transfer to middle, ring, & pinky finger extensors.

Surgical medical facility:
Brachial Plexus Clinic at The Mayo Clinic, Rochester MN
(all surgeries successful)

"Do what you can, with what you have, where you are."
~Theodore Roosevelt
Location: Los Angeles, California USA

Re: Stem cell advancement in China

Post by Christopher »

Roger,
There are more than a few places to go for stem cell treatments in China, and else where (Portugal, Germany, Netherlands, India, Argentina, South Africa etc.) All the places that I've read about are attempting to treat SCI and none of them are based on the standardized clinical trail system that we use here and in Europe. In fact all surgeons and hospitals are charging their patients, which brings ethics into question, since no procedure has been proven yet and patients are usual in a desperate condition.

When I flew to London at the onset of my injury, it was in attempt to get Dr. Thomas Carlstedt (one of the few neurosurgeons in the world that has exerience with reimplantion of avulsed nerves) to fly to Portugal and reimplant my avulsed nerves using adult neural stem cells from my nose with Dr. Carlos Lima. Lima has been at this now for about four years and with very limited success with SCI patients only.

In China they have have been using fetal nasal cell (olfactory ensheathing glial cells), adult nasal cells, umbilical cord blood stem cells, embryonic stem cells, bone marrow stem cells, myelin sheath cells (outermost insulating layer of the peripheral nerve) for attempted treatment of SCI. Very very few of these surgeons conducting these experiental procedures have published any of their results in any medical journals, which puts the question to their reported successes. The only actual certified clinic trial taking place in China is to start very soon, involving umbilical cord blood stem cells and lithium as a growth factor. These trials have been initiated by an American SCI researcher, Dr. Wise Young of Rutgers University. He has worked tirelessly to establish a SCI clinical trial network in China, ChinaSCINet, because of the difficulties establishing one here in the States (which is a very sad reality).

Most of the research I read and gather is accumulated in one source by thousands of individuals in the SCI community. It's a website started again by Dr. Wise Young, Christopher Reeves top neurologist as well, based out of Rutgers.

http://sci.rutgers.edu

where the Cure & Research information is pooled.
http://sci.rutgers.edu/forum/forumdisplay.php?f=32

I read this site almost daily, and any progress that is posted there, will make it here as long as I still have hope for a cure.


My interest in the possibilities stem cells started after viewing a special on PBS called "Miracle Cell" back in April of 2003. Professor Geoffrey Raisman, on of the world leading researchers in the Central Nervous System, neural development, and nasal stem cells is currently starting clinical trials in the UK for TBPI, is interviewed and discusses the abilities and miraculous potentials of these cells. You can download the 1 hour show, which I highly recommend, from a site I have it hosted on:

http://homepage.mac.com/cljanney/FileSharing9.html

The reason why most people will get return of function that have SCI is because it only takes 10% of the spinal cord to remain intact to be able to be ambulatory again. And the supposed reason for a good portion of successes in China, and such, from these experimental surgeries is the intense ongoing physical therapy that is required and implemented after these procedures are preformed. I believe the promise is there, but you can't just blindly throw stem cells at an injury and expect results, they have to be differentiated into neural cells first and then the right kind of neural cells, the inhibitory growth factors that exist in the Central Nervous System must be suppressed and growth stimulators must be activated, and scar tissue that creates a barrier is an obvious concern as well.

The great thing is that there is ongoing research in all these areas and after 4 years of constant research I feel the time is very close where newly injured people will have a much better prognosis them is currently available and then eventually the chronically injured will benefit as well. I think the best thing we can do to accelerate this research is to donate money, promote fund raising and public awareness. Researchers are constantly strapped for cash and spend an unfortunate large amount of their finite time conducting fundraising themselves instead time in the laboratory where I'm sure they'd all rather be.


Chris
Kianas Dad
Posts: 29
Joined: Tue Dec 12, 2006 3:20 pm

Re: Stem cell advancement in China

Post by Kianas Dad »

I just got a call back from a rep that deals with the stem cell procedures in China and she will be emailing me the information today. After I receive it I will post it up for those who may be interested in learning more. I am still skeptical, but curious at the same time. She mentioned that the email will include trial studies from other BPI case they have worked with/on. So far she said we would need to be there 20-30 days and their prices include everything except travel, food and laundry and they are booking out 3 months. Unfortunately insurance covers none of the expense...I will post the info when I get it,

Roger
Locked