Struggling to get past the surgical horror

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By Barb Ickes | Saturday, August 23, 2008 9:09 PM CDT | () comments

Jennifer Tholl of Moline woke up during a surgery recently but wasn’t able to communicate with the doctors or operating room staff. The situation is known as anesthesia awareness and occurs when a patient is aware of what is happening during surgery. (Andrew Link/Quad-City Times) Buy this Photo

This is not a column for the squeamish.

If the reality that nightmares can come true causes you anxiety, read no more.

“My worst nightmare came true” is precisely the way Jennifer Tholl, 37, began our first half-hour interview late last week.

During laparoscopic surgery to remove her gallbladder Aug. 15 at Trinity Medical Center’s West Campus in Rock Island, something terrible happened to the Moline woman: She woke up.

“It’s the second-most traumatic thing that’s happened in my life,” she said. “The first was burying my baby.”

The phenomenon is more widely recognized today than it ever has been. It is aptly dubbed anesthesia awareness and occurs when a patient is believed to be “under” during surgery but, in fact, is aware of what is happening.

Some patients have emerged from the physical paralysis of anesthesia and given an alarmingly accurate account of what occurred in the operating room.

“I woke up somewhere in the middle of my surgery,” Tholl said Thursday. “I felt tug, tug, tug, pull. It felt like someone was reaching into my belly button and pulling my organs out. I wanted to give some kind of sign, but I couldn’t.”

When the paralytic medications wore off and she was in recovery, Tholl said, “I was screaming, shaking and going into the fetal position. The pain was on a level that is completely indescribable, and my body was going into the comfort position because it couldn’t take it.”

Needless to say, the experience was horrifying. Almost as disturbing is the fact that Tholl can’t make herself stop reliving it.

“I’m not OK,” she said. “I’m having night terrors and hyperventilating. My blood pressure and heart rate shoot up. I’m a wreck. I’m a total wreck.”

Her anesthesiologist told her it was not a dream, she said, and Trinity officials instantly offered to pay for psychiatric treatment, which is highly recommended by anesthesia awareness experts and the Joint Commission, which accredits 15,000 U.S. health care centers, including Trinity.

But there was another problem.

Trinity sent a psychiatrist to Tholl’s hospital room about six hours after the surgery. He spoke with her privately for about 10 minutes, her husband, Tom Tholl, said Friday. He prescribed an anti-anxiety medication. The next day, a follow-up counseling session was scheduled — for four weeks later.

Two days after her release from the hospital, she called Robert Young and begged for an earlier appointment, she said, landing a Sept. 3 date.

The delay is not acceptable, according to Carol Weihrer, president and founder of the national Anesthesia Awareness Campaign Inc.

“They know better,” she insisted. “The (psychiatric care) should be within hours. Hours make a difference.”

A Trinity spokeswoman said that Tholl’s anesthesiologist, Dr. Hari Babu, could not comment on the case because of patient confidentiality policy. However, Trinity anesthesiologist Dr. Don Normoyle answered questions at length Friday about anesthesia awareness and agreed that immediate psychiatric care is critical.

“I would make contact with a counselor or psychiatrist right away,” he said. “It would be up to that professional to make a determination on the timetable.”

Weihrer said that immediate counseling can make the difference between getting past the experience and living indefinitely with post traumatic stress disorder.

She knows all about it.

Ten years ago, she lay awake during a five-hour surgery to remove her eye. She, like Tholl, was physically incapable of communicating to the operating room staff that she heard and felt everything that was happening.

“I told the surgeon every word I heard, verbatim,” she said. “It’s a living death, being entombed in a corpse.”

In the interest of disclosure, I can relate, on a much lesser level.

About 20 years ago, at the beginning of an emergency appendectomy, I woke up. I remember someone placing a mask over my face, and I remember getting drowsy and closing my eyes. The next thing I knew, someone was pulling on my chin, pushing down my lower jaw. I heard people talking, though I don’t recall what they said. I felt something being pushed down my throat and then felt something cold on my abdomen.

I remember feeling desperate to shout to the surgeon that I was awake. But I couldn’t move. Couldn’t speak. Couldn’t open my eyes.

I pleaded with myself, “Barb, go to sleep. Go to sleep. They don’t know you’re here.”

And that’s all I remember. I thank God to this day that my awareness ceased at some point during intubation. I am grateful, too, that I suffer no lingering effects. I asked my mom last week if she remembered my ordeal.

“I remember it vividly,” she said. “I’d rather not.”

Weihrer lives with her decade-old nightmare every day. Tholl already is desperate to get past hers.

To pile enormous frustration onto unparalleled fear, Tholl now suspects that her nightmare could have been prevented. Many monitors are widely available for hospitals that track neurological activity.

“It’s just a band that goes across your forehead,” she said. “Heart rate and blood pressure (which are monitored during surgery) are not always indicators of alertness.”

Normoyle said that Trinity doctors “very commonly” use the monitors, but he could not comment on why one was not used for Tholl’s surgery. He added, however, that the devices “are not foolproof.”

Although Weihrer has been campaigning for years to force the widespread use of alertness monitors in operating rooms, Tholl caught on immediately to what she regards as an obvious solution to anesthesia awareness.

“If nothing else, I’d like to see these monitors used to prevent this from ever happening to anybody else,” she said. “There’s no way I’m ever going to have surgery ever again. Ever.

“You expect to wake up and get on with healing. You don’t expect to fall apart. It’s a horrific, horrific ordeal. It’s too horrible to explain.”

Her husband, Tom, can vouch for the fallout.

“Almost a week after the surgery, she talked about it and broke down and bawled her eyes out for five minutes solid,” he said. “She’s literally obsessed with this now. It is consuming her. She has the nightmares on a nightly basis.”

Normoyle said that cases in which patients are completely aware during a surgical procedure are rare, and the overall phenomenon happens only once or twice a year in all surgeries throughout the Quad-Cities.

“Most people just have a vague recollection of being in the operating room,” he said.

Speaking for those who have much darker recollections, Weihrer is working hard for changes in surgical procedures, including the mandatory use of brain activity monitors.

“We need to alert the public — not to scare them, but to spare them,” she said.

Tholl couldn’t agree more.

“My surgeon was awesome, and I’d recommend him to anyone,” she said. “But I don’t know that I’ll ever get over the surgery. How could I?”

Barb Ickes can be contacted at (563) 383-2316 or bickes@qctimes.com.