It’s one of the most popular elective procedures in the world.
Laser eye surgery, or Lasik, as it’s more commonly known, offering enhanced vision in minutes and a life free from glasses and contact lenses.
But a W5 investigation uncovered a small but increasingly vocal group of patients who claim they developed a very rare complication after surgery that left them in chronic pain, unable to work and even contemplating suicide.
Hussein Jenkins’ ordeal began four years ago when he decided to get laser surgery to correct his nearsightedness.
Immediately after his procedure in Vancouver, Hussein knew something was very wrong.
“I was getting visual issues, ghosting, halos, starburst,” the 40-year-old said in an interview from his family’s home in Calgary.
He says an attempt to fix the problem with another laser procedure—a treatment his doctor described as an “enhancement”—made his vision worse and left him with debilitating pain.
“I lost the ability to use my eyes in sync,” he said. “The nerves and the muscles on the right side of my head tightened.”
“It felt like a head injury, it felt like shrapnel. It’s every day from the time I wake up and open my eyes, all day every day,” he said, breaking down in tears. He says his feelings of despair and hopelessness made him want to end his life.
It is a similar story for 25-year-old Gwendoline Prudhomme from Montreal. She developed a “shooting, stabbing pain” in her eyes one year after her Lasik procedure in Vancouver in 2016.
When eye doctors examined her eyes they concluded they were normal and told her problems were in her head.
“I have seen over 20 ophthalmologists. (They) could not explain why I was in so much pain. I got very depressed and suicidal at one point,” she said.
Meanwhile, Christopher Ouellet, who also lives in Montreal, cannot look at a screen for more than a few minutes because of a burning sensation in his eyes after his procedure in 2015. He has given up his work as an accountant.
“Accounting work is on a computer, I can’t do that. My diploma is good for the trash,” he said.
Both Christopher and Gwendoline posted their stories online and joined a community of desperate patients who shared strikingly similar symptoms
Often, they are diagnosed with dry eyes syndrome, a known post-operative complication of laser surgery that typically resolves within six months.
Twenty-seven year old Max Cronin had Lasik twice—once before heading off with the U.S military in Iraq. The second procedure was an “enhancement” he had before returning to school in Texas to become an engineer.
That’s when he developed what his doctors labelled dry eye, said his mother Nancy Burleson, a physician in Texas.
“He was in constant severe pain. He described it as needles sticking into his eyes continuously,” she said. The doctors offered him little help, said Burleson. “They said it will go away. Stick with it, it will go away. “
Eventually, Max had to quit school, couldn’t drive and couldn’t get a job. “He was financially devastated,” said Burleson.
The day after his 27th birthday, Max went to a state park in Texas and took his own life. Burleson has been on a mission to learn more about the procedure that caused her son so much pain.
Ophthalmologist and cornea specialist Dr. Pedram Hamrah sees patients at his clinic at Tufts Medical Center in Boston from all over the world—many are suicidal and desperate for answers.
They have eye pain caused by injury, illness and surgery. Some develop it after cataract surgery. About 20 per cent of his patients are post-Lasik.
Dr. Hamrah says in some cases, what’s dismissed as dry eye, is in fact a condition called corneal neuralgia—severe pain caused by damaged nerves in the cornea.
The condition is often missed because the diagnostic tools that doctors have used for over a century are ill-equipped to uncover the problem.
Historically, doctors have relied on a slit lamp, a device which shines an intense light directly into the eye, and a standard microscope to detect abnormalities, he said.
“But in patients with corneal neuralgia, the corneas can look normal or mildly dry and the vision of the patients is typically 20/20 so there is nothing to put your finger on,” he said.
When Dr. Hamrah’s team used a high-powered in-vivo confocal microscope to get high resolution images of corneal nerves, they made a startling discovery.
“When we started looking at these patients who had eye pain, we found that every single patient who has this also shows these nerve abnormalities,” he said.
Often nerves endings were truncated or resembled a tangled ball of yarn.
“These abnormal nerves fire without reason and this firing causing discomfort or pain in these patients and these nerves become hypersensitive and these patients become super sensitive to all normal things,” he said.
Dr. Hamrah published his findings, including this study in 2015.
How laser eye surgery works
When doctors perform vision correction procedures like Lasik (short for laser-assisted in situ keratomileusis), they use a laser to cut a flap in the cornea, the clear dome rich with nerves which covers the eye.
A second laser reshapes the corneal tissue so light focuses correctly onto the retina at the back of the eye, improving vision and eliminating the need for glasses. Once the procedure is complete, the flap is put back in place to heal.
Research suggests the majority of the time, the process goes well. In fact, a recent study says 96 per cent of patients are satisfied with the surgery—with world class athletes like Tiger Woods and Rory McIlroy happy customers. The procedure is also approved for use among Top Gun pilots, astronauts, and people in the military.
But many questions remain. Doctors still don’t know why some people have excellent results following laser eye surgery and others develop this life altering complications.
Eye doctors insist severe complications are rare
But Dr. Guillermo Rocha, who has been doing laser correction for 25 years and is past president of the Canadian Ophthalmological Society, insists persistent pain after surgery is very rare, affecting one in 10,000 patients.
“It is a very rare complication. It exists, it is real, at this point there is not a clear understanding,” he said from his clinic in Brandon, Man.
“There are researchers in the United States who have performed 16,000, 17,000 cases and have only seen two cases of corneal neuralgia. In my practice, and I have been performing laser surgery since 1995, I have never seen a case of corneal neuralgia,” said Dr. Rocha.
He stressed that more than 7,000 studies confirm Lasik is safe, with over 63 million procedures performed around the world since 1991.
“The success rate is over 99 per cent with the risk of complications less than one per cent. So it really has stood the test of time,” he said.
Dr. Hamrah agrees corneal neuralgia is uncommon, but says only a study will uncover the number of patients who actually have the condition and how many may have been misclassified with dry eye syndrome.
“In terms of the percentage, we don’t have any data whatsoever because there was not a single study done to look. The problem is, we were not able to identify the disease. So without having anything to diagnose the patient we can’t even get numbers of how frequent it is,” he said.
Dr. Hamrah is planning a study of 1,000 patients with eye pain from injury, disease and procedures like Lasik and cataract surgery to uncover the prevalence of this problem.
It is welcome news for many patients who believe the number of neuralgia cases may be higher than reported.
Christopher joined Lasik Complications, an online support group with more than 6000 members. It was founded by Paula Cofer in 2014 when she became an advocate after her own disastrous Lasik surgery in June 2000.
“For me, it was just burning, burning, burning like someone threw gasoline in my eyes…It was horrible and it was incessant. It just never stopped,” she said, “unless I stay on my cocktail of medications. I take a lot of supplements that are geared toward neuropathic pain. It was the worst thing that ever happened to me.”
She said she believes recent studies underestimate the risks of Lasik and is asking the FDA to withdraw approval of Lasik devices and wants the procedure banned.
While doctors and advocates debate the true complication risk, patients say that they feel betrayed doctors never warned them that corneal neuralgia could occur.
Hussein, Christopher and Gwendoline say the corneal neuralgia never appeared on their consent forms, nor did they get information about the potential life altering complications.