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    Old 09-06-2004, 06:49 AM   #1
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    Prudy's Avatar
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    Prudy HB User
    Brain surgery and ALS?

    We have been diagnosed with ALS. I say we because I feel like it is both of us even though it's my husband with the actual disease. One of our friends was telling me that a member of his church has ALS and they are talking about doing brain surgery for her ALS. Has anyone heard of anything like this yet. I haven't seen anything on any of the research sites I have looked at.

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    Old 09-06-2004, 07:29 AM   #2
    Join Date: Jul 2004
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    MotorNeuron HB User
    Re: Brain surgery and ALS?

    Hi Prudy, sorry to hear you husband has als. you will find more info on this forum [url]http://brain.***********.net/forums/forumdisplay.php?s=&daysprune=&f=77[/url]

    where the stars are *** type in "hasty pastry" but remove the space in bewteen hasty and pasty

    The treatment is in Beijing china search though the pages.

    BEIJING - (KRT) - A Chinese neurosurgeon has been besieged by desperate Americans willing to pay $25,000 for an implant of cells from aborted fetuses, a controversial and scientifically unproven procedure that the doctor claims has helped patients with spinal injuries or the nervous-system disease known as ALS but has alarmed Western researchers.

    Dr. Huang Hongyun has performed the surgery 500 times in the last three years, and his waiting list of patients has grown to more than 1,000 - including 100 Americans as word of his work has spread on the Internet.

    Huang is rushing to train more local surgeons to satisfy the frenzy of interest generated by testimonials from patients such as Bob Slattery, 47,
    of Detroit, who was paralyzed in a bicycle accident 30 years ago. Slattery said in a telephone interview that he regained the ability to move his left leg and stand again within weeks of having the surgery in Beijing.

    But top American researchers express deep concern that Huang is forging ahead without first testing the technique's safety or scientific basis in clinical trials with independent review.

    They also are puzzled why some patients claim to see results within days when the body takes far longer to regenerate nerve endings. Without clinical proof, they warn that any improvements felt by patients could be the result of the placebo effect.

    Both severe spinal cord injuries and amyotrophic lateral sclerosis (ALS) generally are considered irreversible, and Huang is treating people based
    on a laboratory theory that many researchers have failed to reproduce in rats, said Dr. Naomi Kleitman, a program director for spinal cord injury research at the National Institute of Neurological Disorders and Stroke.

    "Snake oil is not too strong a word," said Dr. Jack Kessler, chairman of neurology at Northwestern University. Kessler, who began studying spinal injuries after his daughter was paralyzed in a skiing accident, said three patients with whom he has worked have gone to China to have Huang's treatment but he has seen no good evidence of its effectiveness.

    "I'm ticked off because of what this does to patients," Kessler said. "It takes a desperate person and exploits them for financial gain. It puts them
    through an onerous process for no better reason than to line someone's pockets.

    "I have a personal interest in this. If I thought there was anything to this, I'd be the first to defend it."

    Many of the patients are traveling to China because they do not believe the treatment will become available in the United States any time soon.
    Religious and moral objections have slowed research into the use of fetal cells, and Huang's procedure harvests cells from second-trimester aborted fetuses.

    In China there are fewer restrictions on this research, and Huang is being allowed to proceed without having conducted clinical trials that in the
    U.S. would take years.

    American doctors "don't want to confront the political sensitivities of using fetal tissue," said Steve Byer of Dodgeville, Wis., whose 33-year-old
    son, Ben, has ALS and had the surgery in July. Byer says Ben has seen some improvement in his voice, chewing ability and balance, and his fingers have

    Don Sacco, 48, who was left a quadriplegic by a 2001 car accident, had the surgery in June and says he has regained some movement in his hips and knees, and feeling has returned to one arm.

    "I'm sweating, and I haven't sweated in 3 1/2 years," said Sacco, who owns a scrap yard in Alliance, Ohio.

    As for the ethical issues, Sacco said, "All these baby huggers in this country ought to be in this (wheelchair) for a while."

    A number of top American researchers said their concerns with Huang's practice go beyond questions of using fetal tissue or even whether Huang's most dramatic claims can be proved eventually. They warned that it is perilous to sacrifice the principle of testing because the next doctor's claim of a miracle could be bogus.

    These kinds of controversies - pitting conventional science against the hopes of the desperate - have been around for centuries, but they are likely to be raised more frequently as the Internet makes it easier for patients to hook up with doctors and scientists offering radical, even dubious, treatments that go beyond the Western world's rigorously
    controlled approached to medicine.

    "We need, in our society at least, for the issue of safety, to have a clinical trial of some kind to show that there is no harm being done and that the treatments are effective as the claims say," said Dr. John Gearhart of Johns Hopkins University, a pioneer in stem cell research.

    Standard trials provide many safeguards that Huang appears to lack, including mandatory reporting of adverse effects; long-term monitoring of patients; and oversight by independent researchers and regulators.

    Huang admits he has not conducted rigorous studies to prove his claimed breakthrough, saying he has not had time to do so. He acknowledges that he cannot fully explain why his procedure seems to work.

    All he can do, he says, is look at results and assert that many patients appear to respond almost immediately. He does not claim they are cured, but
    spinal cord injury victims report that feeling returns to parts of their bodies, while ALS patients see slight improvements in speech and dexterity.
    Huang also claims - without scientific proof - that nervous-system degeneration, which eventually would lead to death, appears to slow or halt.

    That is enough for Huang to be disdainful of scientific arguments or moral concerns about the use of fetuses.

    "People have lost that original medical sense of exploration," said Huang, 48, who has studied in the United States and believes that Western-style
    medicine has been co-opted by a culture of publishing scientific papers. "I don't really care about getting published, or praise from my colleagues or awards of any kind. What I care about is how much the patients can get out of the treatment."

    Huang is defended by frantic patients whose only worry is the length of time they must endure on his waiting list.

    Don Morris, 33, is applying for a spot on the list for his father, a 52-year-old ALS patient from the tiny town of Johnson Bayou, La., where the community already has raised money for his trip.

    Morris said in an e-mail interview that his family has discussed the medical and ethical issues at length and believe a patient has a right to
    "determine his or her own destiny," including the option of having experimental surgery.

    Huang said he developed his procedure after being saddened by having to tell spinal injury victims they would be paralyzed for life. Building on other researchers' work on animals, he took specialized fetal cells from the olfactory system and transplanted them into the spinal cord and said he
    found that they coaxed the central nervous system into restoring some function.

    The cells, known as olfactory ensheathing glial, help nerves grow inside the nasal passages to the brain and support the sense of smell. Huang uses OEG from second-trimester aborted fetuses because they are easy to obtain; harvesting the cells from adults is too invasive a procedure, he said.
    These are among the few cell types in the body that regenerate constantly because they are exposed to the environment and wear out quickly.

    While the idea seems to be that transplanted OEGs repair broken spinal nerve endings just as they repair olfactory nerve endings, the effect is
    scientifically unproved.

    "It's a black box," said Dr. Paul Reier, a neuroscientist at the University of Florida who focuses on spinal cord injuries and who has attended a lecture by Huang. The Chinese doctor "is doing a lot of procedures, but what is the information that is coming out that really tells us if the procedure is of sincere benefit to individuals?"

    Dr. Wise Young, a neuroscientist at Rutgers University who trained Huang for two years, has been to Beijing to see the procedure and examine patients. "I've seen it with my own eyes," he said. "I don't doubt that it happens. The problem is that it's too fast for regeneration. ... Therefore
    the mechanism for this early recovery is not known. Of course we are now working very hard to understand this mechanism in animals."

    Kleitman, the spinal cord injury program director, who has spent her career studying spinal cord injuries, is sympathetic to the plight of patients and said she is "pushing" the American research community to focus on the work of Huang and others, including looking at clinical trials. She said there
    was no ban on the use of fetal tissue in the U.S., though she acknowledged the political sensitivities. But she said there is related research going on around the world and not yet compelling evidence that Huang's fetal cell approach is the way to go.

    "Where is the data?" Kleitman asked. "I don't think going to the public and asking them what they think the research means" is the proper approach. She
    issued what she said was a challenge: "Present me with a paper that says fetal cells work better than adult cells."

    In the meantime, Huang is at Beijing's Chaoyang Hospital, doing one to six operations a day, up to six days a week. Chinese patients are charged less,
    but foreigners get extra benefits, including access to a separate, shorter waiting list. Most of the money goes to the hospital

    Last edited by MotorNeuron; 09-06-2004 at 07:37 AM.

    Old 09-17-2004, 07:25 AM   #3
    Join Date: Jul 2004
    Posts: 28
    MotorNeuron HB User
    Re: Brain surgery and ALS?

    Prudy on the forum which i posted above, there is a great chatroom. Tho there are few problems wit it at the moment.

    click chatroom on top of forum the go to classic chat scroll down you will see als chat

    good luck

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