an outpatient laparoscopic technique to place two electrodes on each side of the diaphragm muscle, with wires attached through the skin to a battery-powered stimulator. There are no reported side effects related to the exposed wiring. Anecedotally, though, Reeve had stubborn infections at the wire site.
If it gets approved, the Clevand operation will surely be less costly than the Avery, which runs in the range of $70,000. Onders discussed his system at a recent meeting of SCI physicians. He brought along a happy end-user, a guy so happy he joined Synapse as chairman of the board.
Lazlo Nagy cracked up his Harley four years ago. When he woke a few days later, after having been brought back from the dead several times, he couldn't move a muscle in his arms or legs and was hooked up to a ventilator. Eventually, he wound up in a nursing home with around-the-clock care. "I used to cry myself to sleep every night because of the anxiety. I was constantly worried—would my battery go dead, would the machine go all night?"
Nagy heard about Reeve and the clinical trial in Cleveland. "The change in my life has been truly remarkable," says Nagy, 37. "I was in a nursing home on a respirator. The facility was billing Ohio Medicaid $16,000 a month. After getting the surgery, it went to $3,000.
Eventually I returned to work. I'm getting married, and I feel confident that I can go out in the world by myself, without an attendant. It's given me a lot of freedom. I feel safe and comfortable. I don't worry that I'm going to suddenly die." He also appreciates being more nimble without having to lug around the vent. He also worried if his vehicle lift would be able to lift him with the extra weight of the vent.
At the doctor's meeting Onders presented emphasis on another key advantage of an implanted breathing system. He cited a specific case of a C2-3 vent user for 10 years, who was able to get her health insurance to pay for a portion of the surgery. Diane Baumanf lives in Louisiana, about 2 hours from New Orleans. She sustained a lot of water damage during hurricane Rita, but her battery-operated system sustained her even during a power outage.
The market for pacing is small. Besides spinal cord injury, Avery has targeted central hypoventilation syndrome, also known as the Ondine's curse—people can't breathe on their own while sleeping. Onders has expanded his clinical trial to people with ALS, a pool of people tenfold the size of SCI. Phrenic or diaphragmatic pacing is only possible if a person has an intact phrenic nerve, which emerges from the spinal cord at the C3 and C5 area. Any damage to the cord involving the C4 nerves nixes the chance of pacing. But those who have benefited are quick to sing praises, including Nagy, who urges doctors to tell their patients about it.
FOR SALE***
WC Lift; $7,000 new; only used 2 months; asking $3,000. Invacare Storm TDX 3 Power WC; full reclining; less that 1 year old; $12,000 new; asking $2,000. Quickie II manual chair; good cond.; $800. Call David 589-6620.
*Cookbooks for Sale: Recipes compiled by Chapter members; $10:00. Call David @ 589-6620.
*Video tapes for sale. Various topics related to spinal cord injuries. Call David Allgood or Buddy Lawson.
***If assistance is needed to pay for any of the above items, contact Kentucky Assistive Technology Loan Corporation at 1-800-327-5287 for information on loans at 5% interest to qualified candidates.
