Options limited when LASIK doesn't work
By WES ALLISON
© St. Petersburg Times, published April 1, 2001
TAMPA -- For 10 glorious days after her eye surgery, Wanda Barrit's world was crystal clear. Her vision was near perfect, her 20-year reliance on contact lenses seemingly over, her decision to have LASIK affirmed.
Then her world appeared in threes.
At first, her surgeon said the triple-vision was part of the healing process and would clear with time. But soon it became clear it wouldn't, and there was nothing he could do. Over the next two years, six other doctors would give her the same bad news.
"Every time I opened my eyes in the morning, I saw three ceilings, three alarm clocks," Barrit told a roomful of sympathetic LASIK patients in Tampa last weekend. "I went to the movies, and saw three screens."
But whenever she consulted another doctor, she said, "I heard the same thing over and over: "You have to learn to live with your disability.' "
LASIK eye surgery is safe and mostly successful, the industry maintains, with complications affecting fewer than 5 percent of patients. But as the number of Americans opting for LASIK nears 1-million a year, more people are learning a frustrating lesson:
If something does go wrong, your doctor may be able to do little about it.
In response, patients are doing their own research and creating networks to help each other find potential solutions. At a meeting of a dozen frustrated LASIK patients in Tampa on March 24, most said the surgery had given them 20/20 vision, or close to it, but it also had distorted their ability to see clearly, especially at night. Similar groups are meeting in at least 37 states.
A doctor needs only a medical license, and no special certification, to perform LASIK. Although most surgeons are ophthalmologists, they don't to have be, and their training in the procedure can range from a weekend seminar to a fellowship in corneal surgery.
Their training and experience in addressing problems can be just as varied.
"The field is young, so there's not a whole lot of people out there who have experience in managing complications," said Dr. Keith Thompson, medical director of Emory Vision at Emory University in Atlanta, which treats patients with serious LASIK problems from throughout the Southeast, including Florida.
"Even the leaders in the profession are not totally on the same page about how to treat some of these complications, because it's still early in the game," he said.
Many at last weekend's Tampa meeting, who came from as far as Venice, Orlando and Melbourne, have bounced from doctor to doctor, spent hours investigating their problems on the Internet and consulted experts around the country. Some, like Barrit, have found salvation in specialty oversized hard contact lenses, but most are still searching.
When Gretchen McDonald approached her surgeon about the vision problems she suffered after LASIK eight months ago, "he seemed to not know what to do," she said. "When I described the ghosting -- not quite double vision, but sort of -- he said, "I've never heard of that.'
"If you look on the consent form, the very first complication that's listed is ghosting, and it's in quotation marks. That's kind of what we're dealing with."
McDonald, a pianist in Orlando whose night vision has turned poor, now hopes to try oversized lenses as well -- something her LASIK surgeon never suggested or seemed aware of, she said. "They're creating these problems, and they themselves don't know how to follow them."
LASIK stands for laser in-situ keratomileusis. During the procedure, the doctor cuts a flap in the covering of the cornea, zaps the tissue below with a laser, then replaces the flap. The laser reshapes the cornea so light is refracted at the proper angles. It is most commonly used to correct nearsightedness, although it also is used for farsightedness.
It usually works quite well. Most people suffer some blurred or distorted vision for up to a month or so, and doctors must redo the operation to tweak their work in 10 percent to 15 percent of cases, the American Academy of Ophthalmology says.
But complications can occur: The flap can get wrinkled during or soon after surgery, or new cells can grow on the underside of the flap. Minor surgery can fix both. Dry eyes is a common complaint, but it usually is soothed with drops and time.
In a very small percentage of cases, complications can be serious, especially if the treated area of the cornea isn't properly centered, or the cornea is unevenly treated. Sometimes, in patients with large pupils, the treated area might be smaller than the patient's dilated pupil, as happened to Paula Cofer.
The disparity between the corrected portion of the cornea and the uncorrected portion also can decrease night vision and make bright lights play tricks at night. An oncoming car headlight, for instance, may seem exceptionally large and bright, a phenomenon patients and doctors call starbursts.
Nine months after her surgery, Cofer says she still suffers from poor night vision, the inability to distinguish shapes in dim light, and halos and starbursts -- a condition that, at night, can make an oncoming headlight blaze like a search light.
Cofer, who organized last weekend's meeting, has seen specialists at Emory and consulted laser experts in Canada, to no avail. She gets by with glasses and limits her night driving. When she does drive after dark, she turns on the map light in her car and sometimes uses special drops that constrict her pupils to the size of the treated area of her cornea.
"I drove myself crazy for the first few months researching everything that was out there," she said. "I'm in a pickle. There's no options for me."
In his capacity as a member of the national medical advisory board for Lasik Plus Vision Centers, Dr. Lewis F. Groden, director of corneal services at the University of South Florida College of Medicine, reviews such cases around the country.
"With many of these problems that arise, there is at present no real good treatment," Groden said. "Will there be in the future? Hopefully -- and I emphasize that word, hopefully -- there will be. And that's what I tell people."
Most lasers on the market cannot be programmed to fix individual aberrations. New extra-wide lasers can treat large pupils, but they can't always re-treat someone who already has had the procedure.
Experts say the most eagerly awaited breakthroughs in laser surgery will be the biggest boon not for those who are having LASIK for the first time, but for former patients whose eyes need repair.
These developments, called wavefront sensor and custom ablation, allow better mapping and more detailed treatment of the eye. Early testing at Emory is encouraging, Thompson said, and the technology could be widespread in the next year or two.
Dr. Roy Rubinfeld, an American Academy of Ophthalmology expert on correcting LASIK problems, sees three to five patients a day who have suffered complications. He, too, believes wavefront and other emerging technologies will be able to improve even the most serious complications.
"I've done a huge number of procedures, and I have my own small number of patients who have problems. And over time I take patients off that list as technology improves, and we continue to be able to help them," Rubinfeld said.
Surgical Eyes, an Internet-based patient-advocacy group, is helping coordinate support groups like the one in Tampa, and is compiling a database of vision centers, physicians and other resources for people with persistent problems.
Executive director Ron Link complains that while consent forms point out the risks, patients don't realize their options will be limited if something goes wrong. Most can't just go back to wearing their old contact lenses or glasses, he said.
"They don't realize they'll have to pay top dollar for these specialty lenses, and frequently have to go to multiple docs to find a contact that will rehabilitate their vision at least partially," said Link, who wears contact lenses made for people with corneal transplants.
Experts say serious problems could be all but eliminated through better screening of prospective patients, but that takes experience and time. Advocates also say that at $1,000 to $3,000 an eye, there is little incentive for doctors to turn people away.
Better screening and disclosure of potential complications could come out of the courts. Lawsuits over LASIK complications are extremely rare, but some suits are beginning to head to the courts in several states.
Simply having a bad outcome isn't grounds for a suit. But Tampa lawyer Don Greiwe, who sued on behalf of about 10 patients who an earlier form of refractive surgery, radial keratotomy, said doctors could be liable if they are negligent in how they perform the surgery -- or if they're negligent in screening patients.
He is preparing suits on behalf of two Tampa-area LASIK patients now, but has not found any successful suits in Florida so far.
With large pupils and extremely bad eyesight, Nancy Armitage of Oldsmar was a text-book study of a high-risk patient. But she says she never knew that until after the surgery nine months ago, and now she's having trouble reading and seeing in dim light.
For an editor at a software company who reads for a living, that's quite troublesome. Armitage says she learned more at last weekend's meeting than she has from center where she had the surgery.
"I probably didn't research it enough before I had surgery," she said. "I'm just learning now the questions I should have asked, and I'm kind of annoyed they didn't draw my attention to some things. They didn't tell me I was on the outer edge."
LASIK on the Web
U.S. Food and Drug Administration, http://www.fda.gov
American Academy of Ophthalmology, http://www.eyenet.org
Emory Vision Center, Emory University, http://www.emoryvision.com
Surgical Eyes Foundation, http://www.surgicaleyes.org
Council for Refractive Surgery Quality Assurance, http://www.usaeyes.org
To get in touch with the Tampa Bay support group or a group in another state, check the Surgical Eyes Web site or call the organization at (212) 431-6535.
A popular procedure
The number of people in the United States having LASIK eye surgery has been skyrocketing in recent years.
2001: 1,192,500 (projected)
-- Source: American Academy of Ophthalmology
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