Families deal with repercussions after rare but severe complications from laser eye surgery

W5: Deadly Vision, part one W5's Avis Favaro investigates a rare complication from laser eye surgery that ended in tragedy for a Detroit meteorologist.

UPDATE on Dec. 10, 2022:

In response to concerns, U.S. health officials have drafted a warning, suggesting that patients who are about to undergo corrective eye-sight surgery known as Lasik, should get additional information from their eye doctors about potential risks.

The document by the Food and Drug Administration proposes that patients should be given detailed information about the following risks after a review of the latest research, including

- dry eyes,

- problems driving at night,

- visual disturbances,

- a rare risk of chronic pain called corneal neuralgia.

-a small risk that they may still need eyeglasses after the refractive procedure

The document also says companies would be asked to create a checklist, with surgeons required to tell patients about these potential risks prior to the procedure.

Reports by CTV's W5 in 2018 and 2019 documented cases of severe complications and even suicide among patients who had laser eye surgery to correct vision problems.

CTV News approached Health Canada to see if the FDA move would also prompt a review of required warnings to refractive surgery patients here.

In an email, officials wrote that the risks outlined in the American draft document are already listed on its website.

However, that page is noted as having been last updated in 2012 and officials did not comment on questions on any other updates for patients that may be underway.

The FDA will issue its final guidance likely in 2023.

ORIGINAL STORY BELOW

W5 continues to report on rare but severe complications from laser vision correction surgery. Part one told stories of people who felt suicidal because of pain and vision problems. This time, Avis Favaro and Elizabeth St. Philip report on two deaths, and the questions they raise.

Ask anyone who knew her, and they'll say Jessica Starr was a special woman living a charmed life.

She was a successful TV personality working at her dream job. A beloved wife and devoted mother of two young children.

But in just eight weeks, she went from being happy and care-free to severely depressed, tragically taking her own life at age 35.

Her devastated family is now speaking out, claiming that complications after her laser eye surgery led to her suicide.

"This was not supposed to happen. I wasn't supposed to be widowed at 40. She wasn't supposed to die at 35," said her husband, Dan Rose, in an emotional interview with W5 at his home outside Detroit, Mich.

“All I can say about Jessica’s state of mind before this procedure was there was no depression. She was a happy-go-lucky, outgoing, creative, funny, smart professional person," he said.

"This procedure definitely was a catalyst that drove her depression that led to her suicide."

It all began with the best intentions. Initially, Jessica wanted to get laser correction surgery to improve her life. She had worn glasses and contacts for her severe nearsightedness for 23 years.

But, after tumbling down the stairs in the dark, while holding her three-month-old daughter Riley, she decided she needed a permanent fix.

"She looked at me and said 'everybody does this, it is such a common procedure, it is so easy, why haven’t I done this yet. Why haven't I got LASIK?'" said Dan.

But instead of LASIK, her eye doctor encouraged Jessica to get a new version of laser correction surgery called SMILE (small incision lenticule extraction).

It's considered less invasive than LASIK, with a shorter recovery time.

Doctors use a laser to cut a disc-shaped tissue inside the cornea, which is removed through a small incision. The end result is sharper vision.

But after Jessica had her procedure on Oct.11, 2018, she knew something was wrong. She struggled with symptoms like hazy vision, chronic headaches and severe dry eyes.

"She was complaining that her eyes were so dry that they were sticking to her eye lids. I don’t think her eyes were producing any of their own tears," said Dan.

She used eye drops every five minutes, but they brought little relief.

“When she put a drop in, she could see clearly, but that would last five minutes and then it would get blurry," he said.

Her doctor told her she would be able to return to work within five days but she was unable to resume the job she loved as a meteorologist at FOX 2 news in Detroit.

Jessica also had night blindness, which made driving treacherous. Her extreme sensitivity to light made working in the studio unbearable. "She got home from work ... and she just started crying. She said, 'I drove to work today and I couldn’t see anything,'" said Dan.

As the weeks wore on, she recorded several personal videos to document her stalled recovery. In one dated Nov 1 she says:

"I want to just get back to my normal life and right now I'm not living my normal life. It's hard to see," she said.

Appearing drained in another, she describes her ordeal as "six weeks of hell."

Her mother, Carol, attempted to help, but was baffled by her condition.

“I would say, 'tell me how it looks, what do you see?' and she could not even explain it, she said, 'my eyes and my brain are not connecting, mom.'"

Desperate for answers, Jessica returned to her doctor, but felt dismissed, says Dan.

“She felt like he was annoyed, she felt that he was downplaying her symptoms. He also just kept extending the recovery time," he said.

She sought second, third and fourth opinions. Each time, doctors told her she had 20/20 vision; her eyes looked normal; she just just needed more time to heal, said Dan.

"She felt like she was crazy and no one believed her," he explained.

Jessica blamed herself for her decision, which took a tremendous toll on her mental health.

“She said she wasn't sleeping well, wasn't eating, so that's when I could really see the change,” according to her brother, Ryan Starr.

But no one knew how depressed she had become. On Dec.12, Jessica took her own life, leaving a 30-page suicide note.

“I can't believe this. I made one bad decision that took my life from me. I can't go on without my vision," she wrote. "I feel this is the only way out of my pain with my eyes."

Her family is reeling from the devastating loss and is convinced the surgery was the trigger for Jessica’s sudden emotional decline.

"I lost everything,” Dan said. "Jessica was my wife. My partner. My soulmate. This wasn’t supposed to happen.”

In a statement, the Canadian Ophthalmological Society and the Canadian Cornea, External Disease and Refractive Surgery Society, wrote:

"We are saddened about Jessica Starr's death and convey our sympathy to her family, friends and all who are affected. According to the Centers for Disease Control and Prevention, suicide is one of the leading causes of death in the United States and one of the few that is rising. However, it cannot be reduced to any single cause, and there is no clinical evidence linking suicide to laser vision correction surgery."

However, there is at least one death by suicide linked to corrective eye surgery in the scientific literature. In 2015, Swedish reseachers published the case of a 33-year-old patient who died by suicide after laser eye surgery.

And patient advocacy group LASIK Complications (a support network with more than 6,000 members) lists nearly two dozen suicides, including Canadian Paul Fitzpatrick.

In 1996, the successful businessman and self-made millionaire had a Laser eye procedure called PRK -- a precursor to LASIK and Smile. His parents said he started experiencing problems one year later.

"Double vision, really severe headaches sometimes ghosting, and he was unable to read a newspaper a magazine. He was an avid reader and he could also not use a computer," said his mother, Christine Fitzpatrick, from her home in Oakville, Ont.

Paul spent over 20 years searching for relief from severe dryness and chronic pain, undergoing countless laser procedures to ease his symptoms, without success.

His eyes were so sensitive to light, he even wore shades inside, says his brother, Kevin Fitzpatrick.

"The burning pain, the stabbing in his eyes, that was how he described the pain," said Kevin.

Unable to cope, Paul also took his own life on Oct. 6, 2018, leaving a suicide note that said: “Just the pain of burning eyes. Please forgive me for not being strong enough to cope."

Paul’s family also lays blame on his Laser eye surgery, even listing it in his obituary as contributing to his death.

DRY EYE SYNDROME

There are thousands of patients like Jessica and Paul, posting their stories of pain and dryness online.

Several receive the diagnosis "dry eye syndrome." Studies say it's a known complication of laser surgery that can affect up to 40 per cent of patients, by some reports, but are temporary for most.

But some experts believe the condition can be chronic.

CORNEAL NEURALGIA

Dr. Pedram Hamrah treats patients from all over the world at his clinic at Tufts Medical Center in Boston.

He believes some cases of  "dry eye" are, in fact, a condition called corneal neuralgia -- severe pain caused by damaged nerves in the cornea.

The condition is often missed because standard diagnostic tools are not designed to uncover the problem. As a result, patients with “corneal neuralgia “ have corneas that can appear normal, he explained.

When Dr. Hamrah’s team uses a high-powered in vivo confocal microscope to capture high resolution images of a cornea, the damage is clear.

Often the nerve endings of laser eye patients appear amputated or resemble a tangled ball of yarn, he says. These abnormal nerves become hypersensitive, which manifests in pain, dryness and sensitivity to light.

However, the question remains: why do some people do well after laser eye surgeries, and others develop life-altering complications?

Dr. Hamrah now has funding for a study of 1,000 patients, to define the prevalence of corneal neuralgia among patients with symptoms of discomfort, and to better understand the rate of this complication after refractive procedures.

His team is also conducting imaging on laser vision correction patients to understand if untreated inflammation plays a role

"There is an urgency to find out," he said.

Severe complications are rare, insist eye doctors

But Dr. Guillermo Rocha, who has been doing laser correction for 25 years, insists corneal neuralgia after surgery is very rare, affecting one in 10,000 patients.

“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, the past president of the Canadian Ophthalmological Society.

He stressed that more than 7,000 studies confirm procedures like LASIK are safe, with over 63 million procedures performed around the world since 1991.

“Success rate is over ninety-nine per cent with the risk of complications less than one percent. So it really has stood the test of time,” said Dr. Rocha.

But the statistics offer little comfort to those affected by rare complications and their families.

"If you want to focus on the majority of people who are having success with this procedure, I think your focus is on the wrong place. They don't need any follow-up or help, they had a successful procedure," said Ryan Starr.

"But what about the people who dont have a successful procedure? What are they supposed to do? Nobody, of all these different doctors, reached out to (Jessica). ... What was she supposed to do?"