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Hope or hoax' Paralyzed man puts faith in shark treatment

Hope or hoax?

Paralyzed man puts faith in shark treatment

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 &

36;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 Gait?n, 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.