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Operation was wake-up call

Advocate raises awareness of waking during surgery

By Peggy Peck
MedPage Today Managing Editor

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Carol Weihrer, left, talks with Dr. Shelley Freeman at an American Society of Anesthesiologists meeting.

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(MedPage Today) -- About an hour after surgeons started removing her diseased right eye, Carol Weihrer woke up -- but no one in the operating room knew it.

"Anesthesia is a cocktail," Weihrer said. "The part of the cocktail that paralyzed the body was working, so I was paralyzed. But the part of the cocktail that puts the brain to sleep, what I call the 'brain scrambler,' was not working."

Weihrer's tale is not for the squeamish. "For something like two hours I was awake," said Weihrer, which means for almost half of the 5 1/2-hour surgery.

The first thing she heard was disco music playing in the operating room. Then she heard the "surgeon say, 'Cut deeper, you need to cut deeper.' "

That made her scream, but it was a silent scream.

"I knew nothing was coming out of my mouth, meanwhile I could feel them pulling, pulling on the eye."

She struggled to find a way to communicate "trying to move a finger or a toe, something so that they knew I was awake." Somehow, she got through, and she heard her surgeon say, "She is awake."

Relief flooded her mind, and she waited for the surgeon, anesthesiologist or a nurse "or anyone to talk to me."

But no one reassured her. Instead the anesthesiologist increased the amount of nerve-blocking agent pumped into her intravenous line. As the drug went in, "I felt like I was being scalded from the inside. Tremendous burning -- it was like I was being roasted on a barbecue pit."

At that point, Weihrer, who describes herself as religious, thought that "maybe I am following the heat to the proverbial light, so I waited for the beautiful place. But there was just burning, so then I thought maybe I'm in Hell."

Eventually she lost consciousness. But a few hours later, when the surgery was over and she was waking up again, she began to scream: "I was awake while they took my eye out!"

This time everyone heard her.

Brain monitors

That scream in 1998 echoes today as Weihrer represents a growing number of people who have experienced anesthesia awareness. She leads a movement that is pressing the American Society of Anesthesiologists to endorse routine use of brain-activity monitors during surgery that requires general anesthesia.

Weihrer has told her story before rapt audiences in television appearances on CNN, NBC's "Today" show and ABC's "World News Tonight."

On Tuesday the anesthesiologists, who are meeting in Atlanta, Georgia, approved a new practice parameter that acknowledges anesthesia awareness as a condition that might occur at the rate of 1 to 2 in every 1,000 surgeries done under general anesthesia.

The parameter does not endorse the use of brain activity monitors but states that anesthesiologists should determine the need for the brain monitors on a case-by-case basis.

That's not enough, Weihrer said. She won't give up until she is sure that "not one more patient suffers what I suffered."

Playing a different tune

When she isn't accepting invitations to speak at gatherings of patients and physicians, she works on her Web siteexternal link -- activities far removed from her professional training as a flutist.

The 54-year-old holds bachelor's and master's degrees in flute performance and has performed with the Georgetown Symphony as well as community orchestras. She regularly travels from her Reston, Virginia, home to Washington to sing with the National Presbyterian Choir.

Her medical adventure started in 1987 during a national American Guild of English Hand Bell Ringers competition in Kent, Ohio. She was directing 12 children when suddenly she had "a horrible pain in my right eye." A visit to a local emergency room resulted in a diagnosis of scratched sclera -- the white of the eye. The pain did not let up.

The right diagnosis

At home, a visit to an eye specialist revealed recurrent corneal erosion syndrome. As Weihrer explained, her cornea sustained an injury, and in response, the eye produced new cells to heal or fix the injury.

"But these cells rapidly build up, and when you blink, the cells are torn off, and now you have two 'holes' in the cornea," she said.

Once diagnosed, Weihrer began a series of medical and surgical treatments, none of which worked. By 1998, she had undergone 14 operations but had no relief from pain. There was, she said, nothing left to do except remove the eye, a procedure called enucleation -- which she underwent on January 24, 1998.

As she woke up from her surgical nightmare, she found herself frustrated when she was confronted by a wall of disbelief. The nurses and physicians did not believe her claims. She found herself identified as a troublemaker.

The situation changed a bit when she began to recite "everything he said, everything he did" during surgery to her surgeon. She said the surgeon and anesthesiologist confirmed her recall of events, "but the anesthesiologist said that since I didn't feel 'pain' I wasn't harmed."

With that simple assessment, an ardent patient advocate was born.

Recognition, at last

Weihrer said she has not been well received by the anesthesiology community, but she did find sympathetic listeners at the Joint Commission on Accreditation of Healthcare Organizations, the quasi-governmental authority called JCAHO that certifies hospitals.

A year ago, JCAHO issued Sentinel Event Alert 31, aimed at reducing anesthesia awareness, which is also called unintended intraoperative awareness. The commission estimated that every year 20,000 to 40,000 patients undergoing surgery in the United States "wake up" during the procedure.

In its directive, the commission instructed doctors to discuss the risk of anesthesia awareness with patients before surgery -- and to apologize when patients experience anesthesia awareness. It did not endorse the use of brain activity monitors but noted that the Food and Drug Administration issued a favorable review of the Bispectral Index Monitor.

In the days leading up to this week's vote on brain-activity monitors by representatives of the American Society of Anesthesiologists, Weihrer staged a full-court press, buttonholing any anesthesiologist who would listen as she made her case for use of brain monitoring.

Regardless of the outcome of the vote, Weihrer said she has miles to go before she sleeps. Even if the anesthesiologists approve the new policy statement, "it is just a baby step."

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