Tuesday, January 23, 2007
Buying cells & buying hope?
Every year thousands of sick and disabled Americans make medical pilgrimages to China, Russia and Mexico looking for cures. Most are fragile and disabled.

Meeting one of them, Jim Dunn, left a lasting impression on me. Jim is an ex-Marine, a vibrant, fun guy who had skydived for more than 40 years. But when we met, Jim was in a wheelchair. He was violently attacked six years ago, his spinal cord severed. He's a quadriplegic. After years of lying in bed and hearing, 'You'll never walk again," Jim decided to take action. The wheelchair wasn't his destiny, he believed, and he was willing to pay whatever it took to walk.

He found neurosurgeon Dr. Huang Hongyun in China, who said he could help. Jim traveled from California to China for the experimental operation Dr. Huang offered, which would cost more than $40,000.

Dr. Huang injected fetal nose and brain cells (called olfactory ensheathing cells) into Jim's spinal cord, saying it would help regenerate his nerve fibers. Jim's heart stopped after the surgery. He almost died.

Six months later, Jim still is not walking. He's had a little improvement with movement and sensations in his hands and arms, but some doctors say that could be the result of intense rehabilitation.

I interviewed Dr. Huang after Jim's surgery and when I asked him whether Jim would ever walk again, his answer startled me: "I don't think our method right now can cure his spinal cord injury. I don't think Jim Dunn can walk again." I couldn't believe that Jim would have made the trip had he known that. Later, I asked Jim: "Did Dr. Huang tell you that you wouldn't walk again?" His face said it all. Jim looked stunned. "No," he said, "He never told me that." It still gnaws at me, thinking I may have taken some of Jim's hope away.

Jim never saw Dr. Huang after his surgery and there has been no follow-up. Was it all worth it? Would he do it again? Jim says yes even though he still doesn't know the outcome of his surgery decision. It was like "rolling the dice," he says, and he still hopes he will walk and skydive again.

I want to know what you think. Is it worth risking your life for an experimental surgery? Does experimental research deserve more funding?
I have a spinal cord injury and I wouldn't fork out $40,000 for surgery. My friend also has a SCI, and she is going to China to have the procedure done. I personally think that people are desperate. Why can't people live a normal life in a wheelchair? Now a days, there are a lot of resources for people with SCI's. I just find it really desperate.There's a reason why god put a person in a wheelchair and they just have to accept it for what it is.
It's interesting considering what hope and faith can do to a person. A concept that people have years given their lives to - It's an ultimate price. Give your life to get more of life? How can one be sure that the doctor reccomending the treatment in a different country is true to the ethics of his practice and isn't weighing in the financial gain of the procedure?

As a healthy individual right now, I don't agree with experimental surgery, but if I were the one sitting on what could be my deathbed - I think I may reappraise the situation.
Should the patient be presented with EVERY risk possible, as well as the outcomes, then yes.. I do believe experimental research deserves more funding than it currently gets. Jim was told that the cells would help regenerate his nerve fibers, which means, he had a chance at walking again. Dr. Huang later admitted that the procedure would not enable Jim to walk. Therefore, Jim was not given all of the facts. He was led on and lied to. If an individual knows all the facts going in, from the chances of success to the chances of failure... to the chances of severe impairment or death... if an individual is told all these things, then the experimental research deserves to be done on those who agree (knowing the risks.) The procedure outlined in this article does not apply. Jim was not told the risks, nor was he told the facts.
Dear Dr. Gupta:
I had the same procedure done in April of 2004. I spoke with Dr. Huang many times before the procedure. He made it clear that this was not a cure. He said that every time I spoke with him. The cost was #$20,000. Everyone I know who has had this procedure was charged the same amount $20,000. I know he said to me every time "this is not a cure". I have had many changes. Some of the changes have been from my rehabilitation and some have been from his procedure. I have had about 5-6 levels of sensory go down from the original T1-C7. Unfortunately I suffer and have suffered with Central pain for years before I saw Dr. Huang. Now I feel the pain I have not felt since my spinal cord was first opened from an intramedullary tumor. Dr. Fred Epstein was my surgeon at NYU in 1994 and a syrinx operated again by Dr. Epstein at Beth Israel Med. Center in 1999. After the 2nd surgery I had no feeling below T1-C7. Now I feel the intense pain from 1994. That was at T3. I feel lower than that also. I do believe other interal things have been helped. I would go again.
I think it's disgraceful that some people are taking advantage of other's hopes to make a quick buck. I would never risk my life or another's on an experimental, untested surgery. I do beleive that experimental reasearch deserves more funding, because then a lot of the risks associated with the surgery would be eliminated or reduced. It is unfortunate that some people are still buying snake oil- and sometimes it either kills them or mains them.
My 18-year old son is quadriplegic from a 7-20-05 sci accident and I feel that rehab and other new treatments should be utilized before experimentation. Doctors who take patients money without any proof of recovery and give false hope are hurting the cause of valid researchers and delaying the chance for real cures and progress.
Your story of Mr Dunn's experience with "experimental research" is hardly representative of the field and is insulting to those who dedicate their lives and careers to peer-reviewed clinical and biomedical research. Based on this, the question of whether experimental research deserves more funding is sensationalistic journalism at its worst. I do not negate the problem nor the issues, which are very important both personally and from a public health perspective. But please use your discussion forum responsibly.
The Question was asked "I want to know what you think. Is it worth risking your life for an experimental surgery? Does experimental research deserve more funding?"

This question has many sides and answers.

Jim Dunn has spinal cord damage - not a guaranteed death sentence. So one could argue a different response to the question in light of the fact he is not going to necessarily die from his condition.

A disease like ALS, on the other hand, IS a death sentence, so the question, for me, takes a different form because of this fact. I also understand there are those that have lived with ALS for a significant number of years that could be put in Jim's response pool. But for those that have fast-tracking ALS, like myself, the question sports a different answer. If we are going to die with ALS then I don't consider this kind of surgery to have the same life-threating value and for the sake of science, and testing, why not do it if it isn't going to cripple you financially.

Not all of us want to live as a quadriplegic or are afraid to die. I, for one, would like to help the research community discover the viability of treatments. And, if it kills me in the process I would consider this a blessing. Dieing with ALS is a horrible death. That does not make me suicidal! I have never been one to sit in the sidelines, I have to do something and am open to experimental treatments under controlled conditions. It seems valuable to do this under supervised and controlled conditions so the results can be documented. I would be involved tomorrow if available.

So, "Is it worth risking your life for an experimental surgery?" - I would not consider this risking our lives, and "Does experimental research deserve more funding?" YES, but only under supervised conditions - get RID of the SCAM artists!
I could hardly believe my eyes when I read that Mr. Dunn had no follow-up care from his Chinese health provider (I hesitate to call him a doctor) and that he never even saw the guy. This definitely sounds like a sales job of the worst kind. I understand feeling desperate and grasping at straws for an answer, but at least try to investigate and get as much communication in writing as possible. It's almost too much to believe that the guy never gave Mr. Dunn a prognosis. Let's hope he's the only unethical neurosurgeon in China. The Lord bless you, Jim Dunn, and may you run again very soon and fulfill your God-given destiny on this earth.
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