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  1. #1
    Senior Member Max's Avatar
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    Hope or hoax? Paralyzed man puts faith in shark treatment

    Hope or hoax? Paralyzed man puts faith in shark treatment
    By CHRISTIAN BRINGHURST
    Mail Tribune
    After almost two years of paralysis following a snowboarding accident on Mount Ashland, 20-year-old Jordan Koeninger continues to hold out hope.

    "I think anybody in a wheelchair will tell you their ultimate goal is to walk again," says Koeninger, who is paralyzed from the waist down.

    The young Medford man soon will put his hopes in the hands of doctors at the International Spinal Cord Regeneration Center in Tijuana, Mexico.

    "We can hope for full recovery - it's been done before and there's no reason it can't happen for me," he says.

    The experimental procedure is a gamble, however. The doctors operate out of Tijuana because the Food and Drug Administration has not approved part of the ISCRC treatment regimen.

    Because of its experimental nature, insurance companies will not cover the estimated $200,000 medical bill. The Koeningers held a fund-raising auction recently using items donated from the community.

    The Koeninger family has declined to discuss many details of the case.

    They did say, however, that they have already met people for whom the procedure has worked.

    "Scott was the one I remember the most," Jordan Koeninger says. "He was five months post (surgery) and he's been in a chair for 13 years and he's starting to move muscles in his legs."

    According to officials at the ISCRC, they have treated 58 paralysis patients in the last 12 years.

    The treatment initially consists of a common - and FDA-approved - operation known as decompression and reconstructive surgery, which eases pressure on the spinal cord while rebuilding and strengthening the spine itself. Sometimes removing scar tissue and draining cysts is also necessary.

    The controversial part of the ISCRC treatment follows surgery. It consists of a series of transplants from the embryonic cells of a shark to help the body regenerate its own neural pathways.

    "The shark is an animal that has such a tremendous immune system that will kill every virus," says ISCRC medical director Dr. Fernando Ramirez.

    The reputed strength of the shark's immune system has led to the popularization of shark products as a cure for everything from cancer to AIDS.

    Experts on this side of the border are skeptical of the procedure.

    "We just had our national meeting in the spring," says Dr. Donald Ross, a neurosurgeon at Medford Neurological and Spine Clinic. "Nobody said send all of your patients to Mexico for this therapy."

    Dr. Paul Reier, a specialist in central nervous system disease and trauma at the University of Florida, spoke with Ramirez at a World Health Organization conference in Iceland in June 2001 on emerging therapies for spinal cord injury.

    "I was one of two members of the scientific audience who challenged Dr. Ramirez quite strongly about his work," says Reier.

    "Another individual stood up and followed my comments with, 'What will it take, Dr. Ramirez, to make you stop doing these surgeries?'"

    Reier says that Ramirez has a number of different hypotheses as to why his treatment purportedly works.

    "Some are even conceptually intriguing if one is willing to think way outside the box," says Reier.

    "However, I have yet to find one that has enough supporting scientific evidence to it, to even begin imagining that he may be on to something totally remarkable and unexpected."

    Officials at ISCRC say they have had no episodes of rejection in the 58 patients treated so far.

    If that is true, one possible reason is because of the nature of spinal cord injury and the composition of the spinal cord itself, says Dr. Christopher Kauffman, an orthopedic surgeon at University of California at San Diego.

    After the injury, a process called lipid peroxidation "kills the fat cells that nourish the nerves and that's what kills the spinal cord," he says.

    The resulting tissue atrophy and the limited vascular network in the spine itself could be preventing the shark cells from spreading through the body, thus forestalling rejection, says Kauffman.

    Kauffman - who once tried to talk a patient out of the ISCRC treatment - is adamantly opposed to the practice going on in Tijuana.

    "They're bilking that family out of whatever money they are paying," he says.

    "For a xenograft (animal cell transplant) to have any chance of working in the human body, it has to come from a species close to us biogenetically" such as a primate, he adds.

    "The only thing a shark cell can differentiate into is a shark - they don't have the same genetic structure."

    American health officials say the lack of published scientific data from Ramirez and his colleagues renders the clinic suspect.

    "How many cutting-edge medical breakthroughs were advertised in the newspaper or the Internet and then became mainstream?" asks Ross.

    "I can't name any. That's not where legitimate medical claims are made."

    Dr. Robert Lewis, a spokesman for ISCRC whose training is in psychology, believes that mainstream medicine is too limited in its approach to treating spinal cord injuries.

    "In general, we find the belief system of general medicine is that there really is nothing that can be done for spinal cord injuries," says Lewis, although "traditional medicine is getting closer and closer to where this facility already is."

    The ISCRC reports extraordinary success in treating paralysis - a condition for which the prognosis is often bleak.

    One apparent success story comes from 14-year-old Carl Madsen Jr. of Sacramento. Carl was diagnosed with a "complete T-4" injury - meaning that he had no feeling or function below the fourth thoracic vertebrae.

    After exploring other options, the Madsens looked into the Tijuana clinic.

    "None of the doctors up here believed in it," says Carl's father, Carl Madsen Sr.

    Madsen reports that his son is now walking with the aid of leg braces, just a few months after surgery.

    Doctors at the Tijuana facility pick their patients very carefully, only treating those whose spinal cords have not been completely severed, or transected.

    "We have interviewed and declined about 500 (patients) because we couldn't see any spinal cord to work with," says Ramirez.

    However, the presence of viable spinal cord tissue also plays a role in a patient's recovery from traditional decompression surgery, say experts.

    Lewis concedes, "We count on the fact that the surgical intervention will be helpful - in fact, many patients have benefited right after the surgery."

    He says, however, that Dr. Romero Gaitán, the clinic's neurosurgeon, did more than 500 decompression surgeries before joining ISCRC and experienced what he found to be very limited success.

    "The implication of that is that there is something at work above and beyond the surgery," says Lewis. "It's very difficult to tease out which is which."

    Although reactions from the mainstream medical field remain skeptical, health experts understand that people like Jordan Koeninger continue turning to alternative remedies for hope.

    "It's heartbreaking," says Scott Roy, communications director at a spinal cord injury research center called the Miami Project in Florida. "Sometimes people want to hear what they want to hear."

    The Koeningers, however, remain optimistic.

    "My son is young and healthy and I believe he will walk again," Peggy Koeninger says in a written statement from the family.

    "We know where we're going with this," says Jordan Koeninger, "and we know what we're doing."

    Reach reporter Christian Bringhurst at 776-4459.



    --------------------------------------------------------------------------------
    You can find this story online at:
    http://www.mailtribune.com/archive/2...es/04local.htm

    --------------------------------------------------------------------------------

  2. #2
    Senior Member vgrafen's Avatar
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    poor kid, poor family

    Man, I wish I could reach that family on this one. Not that I'd have any great influence, and probably there's a lot of people warning them against it, but I just hate to see them get conned like this, especially at $200,000, money which could be much better spent elsewhere.

    But we make our decisions and live with them, and the K family is making theirs.

    vgrafen

  3. #3
    Masha (who was recently in the news for her walking at graduation story) had this treatment



    http://carecure.org/forum/showpost.php?p=249920
    SCROLL DOWN THE PAGE TO:
    Help Me Walk
    Masha Malikina surrvived the Chernobyl nuclear disaster. But can she recover from a car crash that has left her paralyzed?
    Virginia Parker
    Special to the Jewish Time

    http://carecure.org/forum/showpost.php?p=77453
    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    http://www.electriciti.com/spinal/intro.htm

    Mexico has long been a Mecca for people seeking alternatives to traditional medicine. In Mexico, ethical physicians have treatment options not currently possible in the United States. Europe has a similar philosophy. The International Spinal Cord Regeneration Center is fortunate to have Dr. Fernando C. Ramirez del Rio as the Medical Director, and as an Associate one of the greatest medical minds of the 20th Century, Dr. Wolfram W. Kuhnau.

    For years people have been coming to Tijuana for cancer treatments. There is a reason for this. Physicians are using therapies developed in Europe to treat their patients. We do not practice "alternative" medicine but rather "proper" medicine, since there is no alternative to proper medicine. Proper medicine is the ethical applicaiton of safe and effective technologies to the healing arts.

    The location of the Center is very convenient for the patient. Being in a foreign country we are aware of the apprehensions people have is comingfor treatment. Our center is less than 500 yards from the Internationalborder, appproximately a one minute drive if coming by car. It is so close it is within easy walking distance. We'll help you arrange lodging and transportation during your stay.

    Welcome to the future! Embryonic Cell Transplant Therapy is no longer a dream but a reality. Embryonic Cell Transplant Therapy was pioneered by Dr. Paul Niehans in Switzerland. Dr. Wolfram Kühnau, friend and disciple of Dr. Niehans, continued his work in Embryonic Cell Transplant Therapy. Today, Dr. Fernando Ramirez del Rio with Dr. Kühnau continue to pioneer this breakthrough procedure. Dr. Ramirez is the Medical Director of the International Spinal Cord Regeneration Center, which specializes in spinal cord regeneration. Our Chief Neurosurgeon is Dr. Carlos Romero Gaitan.

    http://mysite.mweb.co.za/residents/bhouston/page3.html


    The International Spinal Cord Regeneration Center, following the work of Wolfram Kuhnau, has been at the vanguard of clinical assistance to those suffering from spinal cord injury. Its work is offering more than hope to those paralyzed by their injury.

    Dr Fernando Ramirez del Rio heads up the clinic which is situated in Tjiuana, Mexico. The clinic is five hundred meters from the border of San Diego, California. Use is made of Xenotransplants - which are essentially embryonic cells from a blue shark.

    Although the use of embryonic cell xenotransplantation is the most controversial aspect of this work, its success lies in the fact that the procedure, taken in its totality, is a combination of several interventions, most of which are already well known and which fall within the spectrum of conservative medical protocol. Our observations have led to the conclusion that decompression and reconstructive surgery, which renormalizes the supporting spinal column, combined with the microsurgical removal of scarring tissue and the introduction of a specialized cyst-draining shunt developed by Dr. Carlos Romero, chief neurosurgeon, each combine to optimize the xenotransplant therapy.

    Decompression surgery by itself is insufficient, however. This is demonstrated by the work of Dr. Romero, who before joining ISCRC had performed more than 500 decompression procedures. He found the results lacking, as many of our patients have also. They come to us having had some form of surgical intervention shortly after their injury, are diagnosed by their original treating facility as being complete but not transected, and have made but minor progress. They are looking for something more. It was not until the traditional decompression procedures were combined with embryonic cell therapy that Dr. Romero and our treatment team began to see more concrete signs for hope.

    In summary, both human clinical observation and an increasing body of basic research is supporting the essential postulates that 1) new neural growth does occur within the mammalian CNS and the peripheral spinal cord as the result of transplantation, 2) that mechanisms inherent to neural cells serve to orient cell growth spatially in non-random patterns, which allows for excitation and transmission of sensory and motor signals, 3) that increasing levels of sensory and motor function are made possible through embryonic xenotransplants, and 4) this increase in normal neural function can be measured in human subjects by evaluation procedures such as the evoked sensory potential test that bypasses the patients conscious awareness of sensory excitation and reception, thereby answering the potential criticism that a patient will respond affirmatively to evaluations of function as a means to please the investigator.

    In conclusion, our work is demonstrating that a combination of procedures that includes 1) decompression surgery, 2) microsurgical removal of scarring tissue, 3) orthopedic reconstruction of the boney spinal structures to support renormalization, 4) cyst reducing shunts, and 5) the transplantation of embryonic cells from the first trimester of Blue shark gestation at the injury site of a human subject, combined with 6) a systematic program of physical rehabilitation therapy, is not only safe but effective in the treatment of paraplegia in selected cases in which at least 25% of the original neural mass remains across an injury site with an intact dura mater.

    In essence, the treatment protocol is as follows:


    Bi-weekly injection into the spineous process below the level of sensation of embryonic brain stem cells and embryonic spinal cord cells.

    Daily injections of nerve growth factor

    Daily intake of 4-AP

    Daily intake of Vitamin C and Vitamin B
    ~~~~~~~~~~~~~~~~~~~
    Reconstructive Surgery

    In most cases of paralysis, the spinal column has been damaged in some fashion. Using Embryonic Cell Transplant Therapy we can regenerate the nerves in the spinal cord. However, that is only part of the procedure. We have to make sure that once we begin the regeneration process on the spinal cord that there are no other obstacles to recovery. In most cases, we must perform reconstructive surgery.

    Two major problems present themselves at the site of the spinal cord injury. These include compression of the spinal canal and cysts that form at the point of injury. At the site of the injury there is usually a narrowing of the spinal canal, which impedes the electrical impulses to the lower extremities through the spinal cord. With reconstructive surgery, we open up the spinal canal, removing any bone, scarring tissue or bullet fragments. We reconstruct the canal so that it has as much room as it did before the injury.

    The second problem is cysts that form at the site of the injury. A cyst can also impede the electrical impulses in the spinal cord. They attach themselves to the spinal cord making it almost impossible to remove surgically. If you drain a cyst it is generally a matter of time before it fills up again with fluid. Dr. Carlos Romero Gaitán has developed a shunt that is permanently inserted into the cyst and drains it into the abdomen. This effectively solves the problem of the cyst filling up again.

    Post Surgery Treatment

    At the time of the surgery the surgical team implants embryonic cells into the spinal cord, which starts the regeneration process. One treatment is not enough to regenerate the damage that has been done. We recommend the patient return to our office every two weeks for additional embryonic cell transplants. The speed of recovery depends on the level of the injury and how frequently the patient comes in for embryonic cell therapy. Someone that is a C5 has a longer period of recovery than that of a L2.

    During the bi-weekly visit, the doctors will evaluate the patient to see how much progress has been made and, if necessary, adjust the mixture of the embryonic cells for therapy. The patient will be able to chart their progress in a relatively short time. We have had many patients notice immediate improvements the day after the surgery.

    What The Treatment Includes

    The treatment program includes the following procedures:

    Initial Consultations
    Pre-Surgery Examinations
    Electromyography Test - Pre-Operative
    Peripheral Nerve Velocity Conduction - Pre-Operative
    Reconstructive Micro Surgery on the Spinal Column
    Orthopedic Reconstructive Surgery on the Spinal Column
    Embryonic Cell Transplants During the Surgery
    Hospitalization for Approximately 7 to 10 days
    Medications while Hospitalized
    Post-Surgery Follow-up Examinations
    Embryonic Cell Transplants over the course of the treatment, administered every two weeks
    Electromyography Test - Post-Operative
    Peripheral Nerve Velocity Conduction - Post-Operative
    Psychological Consultations every two weeks at the clinic location

    [This message was edited by BirdeR on Aug 18, 2002 at 03:18 PM.]

  4. #4
    Senior Member Max's Avatar
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    Birdie,

    I also saw her graduation story on CNN

    But she can take couple steps with walker...and
    it was not mentioned anything about shark treatment &
    I assumed she had had function after her paralysis

    I also presume that if she regained function due to this treatment Tihuana Docs
    would advertize it world wide

  5. #5
    Senior Member mk99's Avatar
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    I don't have any problem with experimental surgeries. Without them we're all going to die of old age (or worse) in our wheelchairs.

    I have a problem with $200,000. If this procedure was priced similar to Kao's or other options I would be more inclined to not think "It's just a scam". But the cost is absurd... especially considering it's in Mexico which is not exactly a high-cost, high-wage country.

    58 patients at $200K a pop? that's a lot of coin anywhere, let alone Mexico.

  6. #6
    This article brought tears to my eyes.
    I always believed a cure was out there somewhere.
    I'm going to fire up the old Rambler and rob a few banks while making my way to Mexico. These doctors in the U.S. been holding out to long, their in cahoots with the medical suppliers. I'm gonna walk.

  7. #7
    Senior Member Max's Avatar
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    Mike,

    I agree with you--with just less thanquater of these money we can get
    much better trerapy in Moscow(Russia) & Kiev (Ukraine)

    Its still smells fishy in Mexica

    ==============================
    "With every scientific advance, we grow closer to unlocking the mysteries of life and creation. But what have we gained if in the process, we lose our humanity. The most powerful thing we pass along to our children may not reside in the genes, but in the soul."
    The Outer Limits(Criminal Nature)



  8. #8
    Senior Member Jeff's Avatar
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    TVOT

    We're with you. Max had suggestions in Eastern Europe I'd follow long before Tijuana. Cheng, Kao, OEG in Beijing, Brisbane and Portugal......there's probably a better answer worth robbing banks over.

    ~See you at the SCIWire-used-to-be-paralyzed Reunion ~

  9. #9
    Senior Member chastev8's Avatar
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    what the..

    I have been told that people have already recieved ESC and nothing happened. Hell, its even on the Kieve site. Why the crap would shark cells work and not human stem cells? I would rather get my spine untetered by Barth Green have my medicare pay for it then go to the Ukraine to get human stem cells for a few thousand.

    c s ellis

  10. #10

    No Justice

    My plans to go to Mexico for the shark treatment have been ruined.
    I called some ADA advocates and asked if I robbed a bank would the bank and the cops give me enough time to transfer back into the car.
    They told me since it's crime ADA would not cover my situation.
    So tommorrow I'm going to get in touch with the ACLU.
    Anyone know that attorneys name with the pigtail?
    I'm gonna walk damn it.

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