By Avian Carrasquillo Daily Herald Staff Writer
Posted 8/16/2004

Wheeling Trustee Trevor Lehmann is about to undergo a new surgical procedure in China that could give him a chance at a better quality of life.

Lehmann, who was diagnosed with amyotrophic lateral sclerosis - or Lou Gehrig's disease - in March, has slowly lost mobility and the ability to speak clearly due to his illness.

Now he's hoping some of those symptoms could be reversed with a surgical procedure now available in China.

He'll leave in September.

The procedure, known as olfactory ensheathing cells (OEC) transplantation, involves the injection of fetal cells into the brain of the patient. Lehmann said it has helped some ALS sufferers regain speech and mobility.

One of those patients is Ben Byer of Chicago, who was experiencing mobility and speech problems similar to Lehmann's as a result ALS. Since having the surgery July 30, Byer has improved significantly, his dad said, offering hope that the operation could have the same effect on Lehmann.

"He's shown some or notable improvement in voice clarity, diction, specificity," Byer's dad, Stephen Byer, said. "His tongue appearance before was a mottled red and white. Now it's back to pink. He has improved chewing and swallowing. He can drink without choking.

"The mobility and appearance of his hands has improved," Stephen Byer added. "Before the surgery, when his fingers would be at a resting position, they would go in five different directions. Now they are normal looking, and his hand strength has improved."

Lehmann will travel to Beijing on Sept. 11. He'll meet with doctors there before having the procedure done.

In those meetings, doctors will administer a series of tests on Lehmann, including: magnetic resonance imaging of the head and spinal cord; an electromyogram, in which the nerves are probed with electrodes and a needle to determine the responsiveness of the nerves; a blood work-up and urine analysis; a motor function review to determine the usefulness of his hands, arms and feet; and pulmonary tests.

Though the procedure still is relatively new, Lehmann said he's not concerned about it.

"China has done over 400 surgeries (of this kind) to date," Lehmann said. "The first ALS patient was in January of 2003."

Of those first patients to have the surgery, some have continued to show progress 18 months afterward, Stephen Byer said, but it's uncertain how long improvements will continue or last.

And though she supports her husband, Jennifer Lehmann still has some concerns.

"I have my reservations about it. ALS patients are desperate and willing to try anything that could be beneficial. I'm concerned that they are experimenting with it," Jennifer Lehmann said. "Also, the amount of money ($20,000) for the operation is a concern. What happens if it only works for a short time? Do you go back and have another surgery?

"But then I think about my father," she said. "My father was a heart transplant pioneer. Had my father not done that, he wouldn't have lived an additional 18 months. If this procedure gives Trevor more time with us, then I'm all for it."

Dr. Alex Valadka, an associate professor of neurosurgery at the Baylor College of Medicine in Houston, Texas, and a member of the American Association of Neurological Surgeons, said that because the surgery is still relatively new, much doubt still remains in the medical community.

"If it sounds too good to be true, then maybe it is," Valadka said, noting the surgery could be giving patients false hope. "Hopefully, I'm wrong and the surgery proves to be effective. If that were the case, I'd be the happiest guy in the world.

"I think there's too little information available to really know for sure if it works. If patients are reporting significant gains after a few days, great, but the true measure is how effective it is in the long run."

The Les Turner ALS Foundation, which awarded Lehmann and his wife with the "Humanitarians of the Year" award for their work to help others with ALS, has issued a statement regarding the procedure.

"Those at the Les Turner ALS Foundation feel that currently there isn't enough scientific data ... to determine if it is an effective and safe option for people with ALS," the statement reads. "Each patient should make his/her own informed choices about treatment options based on physical, financial and emotional resources."

The procedure is not available in the United States, because the fetal cells in the procedure come from abortions. The Bush administration is opposed to embryonic stem cell research that requires new embryos. Researchers who receive government funding can only use existing supplies of embryonic stem cells - so no new embryos will be destroyed.

Lehmann believes that "close-mindedness" is preventing lives from being saved with this procedure here.

"This country needs to provide the best possible health care to its citizens," he said.