United Brachial Plexus Network, Inc.

I had a motorcycle accident in July 2005. The result was a severe brachial plexis avulsion of c5,6,7,8. Needless to say, my left arm is paralyzed with pain constant. Has anyone explored the new research possibilities with stem cell research to reconnect the nerve pathway at the point of alusion???? I refuse to accept that I will never have use of my left arm again.

Hi Frank, check out this thread on here http://ubpn.org/messageboard/thread ... hread=8951 and this one http://p072.ezboard.com/fadultswithbrac ... =229.topic on the TBPI Group messageboards http://pub28.ezboard.com/badultswithbra ... usinjuries

Lizzy B

Hi my name is Brandon with the same injury except mine was on a mountain bike and it happenned may 10th. what is your name? where are you from? who is your doctor? have you had any surgeries yet? I just had surgery 3 weeks ago today. Had it done at the university of Washington by Dr. Kliot. He also has quite a substantial grant to research stem cells and peripheral nerves and he said that anything like that is about five years away. so good luck and let us know some more about you.

Brandon ATRBPPI

I understand why doctors say that... 5 years away... but why are researchers saving paralyzed rats limbs over five years ago w/stem cells? If people are willing to take the risks, then why not help them do it as safely as possible?

I have a better chance of getting my own medical degree & becoming my own surgeon so I can apply all the proven research that already exists to save my own arm from the point of no return/atrophy/toothpickville... amputation

There was a stem cell surgery a few years ago that saved a seventeen year old boy from a life of lost potential and pain of living in a wheelchair. He had a nail shot from a nail gun puncture thru both sides of the left half of his heart. With all the damage and scarring his heart would never improve beyond 40-50%, keeping him in a wheelchair for the rest of his life.

Courageous and correct doctors tried an experimental stem cell surgery, that was similar to one happening in Europe for heart attack patients, on his heart and brought it back to better than 90% w/in 6 months. He finished his high school year playing sports and living a much fuller life than some bureaucrat has deemed legal and acceptable.

Since this kids successful surgery the FDA has decided that this procedure can not happen again in the U.S. until who knows when...
Priorities are very askew and off target! This boy had his life as he loved it handed back to him, now that same opportunity has been stolen from countless others due to some distant decision that has nothing to due with a just human sense of right and wrong.

Want to read a leading a leading scientists opinion about this...?

Susan J. Fisher, Ph.D.
Professor, Departments of Stomatology, Anatomy, Pharmaceutical Chemistry, Obstetrics Gyncology and Reproductive Sciences and Faculty Director, Biomolecular Resource Center at the University of California, San Francisco.

"The teenager who was shot in the heart with a nail gun evidently was treated with his own adult stem cells, from his bloodstream, in an experimental procedure that the FDA has since said cannot be carried out again without further study."....

continued.... http://www.pbs.org/wnet/innovation/experts_qa6a.html

I know this is a bit of a venting, but there really needs to be some ring leading going on here, to pull all these talented Doctors, Professors, Researchers, and Scientists together to collaborate and bring this amazing work up to speed to reach it's true potential. Unless I'm the only one unsatisfied with a limp limb attached to my once active body.

I'm game for any ideas and collaboration to help cure the curable and prevent unneeded wasting of human potential and happiness...

Heal well,
Christopher

Brandon, I live in Pittsburgh. I had surgery last week to see if there was a complete avulsion. There was. So all the Dr. Adeleson could do was a few nerve grafts to my shoulder. He said there was not much he could do because there was a complete avulsion from the nerve root at the spine at C5678. I was going to go to the Mayo Clinic but found this Dr. here in Pittsburgh. I hope I did the right thing. Right now, I just want to stay away from Drs. and try to cope with this.

Brandon, What kind of surgery did they do to you?

I'm with you on this one Christopher. There could be more research in this therapy if only all the loose ends could be tied together and various government bodies could put aside the fear that they seem to have of even mentioning it.

The major problem is a matter of perception; you mention stem cell research to the ordinary man or woman in the street and odds on you'll get drawn into a big discussion (re; argument) about embryos, in vitro fertilisation and even abortion, regardless of the fact that adult stem research is what you want to talk about.

Politicians know this and also know that if they are seen to be supporting this kind of research, even if it is essentially only ADULT stem cells that are used, the perception by the general public will be that it involves all the subjects I mentioned above.

Supporting this publicly will lose them votes, and this in my opinion is why this type of research is stalled practically every step of the way. I could be wrong, but I seriously don't think so.

I personally think that it is the general public that need to be far more widely informed about the research that is going on and its potential for treating all kinds of conditions in the future. Hopefully then just the sheer force of numbers of people who want this to receive the proper funding and support would finally persuade the powers that be to wake up.

Sadly, I think it'll be a long time coming though.

Lizzy B

More proof in the pudding...

The stem cell therapeutic surgery performed on that boy from Texas which has since been outlawed in the U.S., but being done in parts of Europe & Asia, was just performed on the Hawaiian singer Don Ho. It will be interesting to follow his recovery since he'll get more public attention because of his 'celebrity'.

This is the same since that will be the future cure for paralysis & many more diseases and disorders. Helping the body to cure itself!!!

Two links about surgery and current state of recovery for those interested... (articles written a day apart from each other)

http://abcnews.go.com/Entertainment/wir ... id=1380063

http://kgmb9.com/kgmb/display.cfm?storyID=6706&sid=1183

Cheers,
Chris

PS Lizzy, I couldn't agree w/you more... educating people on the realities/truth of the nature of the science is paramount! It's a bunch of BS semantics in the way. If the word "embryonic" was never attached to the science, people might be able to see it for what it is. Even "embryonic" stem cells are now made using discarded eggs that have never been fertilized w/a sperm but become useful by replacing & implanting DNA from another's donor cell (like from someone's skin). This egg could never produce a fetus/child/human being, but could amazingly save many many humans.

Time will prove the truth in the end, but how much time will it take. I've never been one for politics before, but the ignorance and naivety of some that want to control the lives of others is quickly steering me down that road. I would like to give a value and purpose to this "BPI experience", and others like it, to help make it a distant memory in the medical & human history.

I would like to hear someone say "oh wow, that happened to you when there wasn't a cure for it, holy crap"... ahhh... the future

I've always wondered why I can't donate one of my own eggs for stem cells for my arm. Hell, I'm reminded every month that I still have plenty to spare. What would be unethical about that? I mean, if i can put my eggs up for cell for infertile couples, why can't I use the same stuff, MY eggs, to grow nerve cells for MY body.

Now this is going to sound bad, and I am bias, but it seems that stem cell research and surgery should be much further along for people with spinal cord injuries/ nerve damage. I know stem cells can be used for all types of medical uses(ie fixing hearts), but paralyzation and more importantly constant neuropathic pain is something people have to live with. Alot of the other applicable uses of stem cells are to stop people from dying. That doesn't make sense.

So I incurred a TBPI at age 29 and lived with the pain and depression for 40 years. Then my heart goes bad because my body is aging much faster than it should because of the constant stress and side effects of medication. The medical community refuses to let me die, so they use stem cells to keep my heart going so I can live another 15 years in unbearable neuropathic pain. Shouldn't the senario go, I incur a TBPI at age 29, have stem cell surgery to fix my spinal cord injury. Get most of my arm function back and relieve the neuropathic pain by fixing the broken circuit. Live a healthy active life w/o the stress of constant pain and miraculously, my heart doesn't deteriate faster then it should and I live to a healthy age of 90 and die of natural causes.

The medical community will do everything in thier power to keep people from dying, but when it comes to living, tough sh*t. Just take some medicine and stop complaining. That's screwed up in my opinion.

THANX SUSAN

Everyone is right! but why are we powerless to do something about it. As a matter of fact we aren't powerless, perhaps we should be the ones to do something about it. Obviously no one else will, most people have no idea what BPI is let alone that stem cells are basically the best chance we have for a truely succesful recovery. Definitely better than our options now.
Brandon