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Survivors Of Laser Eye Surgery Complications Are Speaking Out On TikTok, And Here's What They Want You To Know

"My eyes felt as though they were burning and someone was pushing small shards of glass into them."

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Laser eye surgery is a method of correcting vision where the eyes are numbed and changes are made to the cornea using lasers. Specifically, LASIK eye surgery is thought to have a 96% success rate. Around 10 million Americans have had this surgery since it was approved in 1999.

Patient undergoing laser eye surgery
Science Photo Library / Getty Images / Science Photo Library RF

Although complications from these procedures are rare, when something does go wrong, it can go really wrong — and the patients with the worst outcomes are often left to pick up the pieces.

Person depressed with the curtains closed in their room
Kittiphan Teerawattanakul / Getty Images / EyeEm

Erin Orchard, 33, is among the estimated less than 1% of people who suffer long-term complications after receiving laser eye surgery. Erin has been discussing her experience on TikTok and recently posted a video where she expressed grief over some devastating news she had received. Her friend — a fellow member of the laser eye surgery complications support group she belongs to — died by suicide.

Erin talking about how her friend Martin died
@erinorchard88 / Via tiktok.com

"Since I joined the group in 2019, I believe three people have died by suicide," Erin told BuzzFeed. "Suicidal ideation and suicide is common amongst people who suffer from laser eye surgery complications, such as chronic pain."

@erinorchard88

Still trying to hold on to hope #lasereyesurgery #lasik #prk #chronicpain #chronicillness #spoonietiktok #spoonielife #fyp #tired #ptsd

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Erin's chronic pain nightmare began in January 2019, after she had PRK surgery — a laser eye procedure that treats nearsightedness, farsightedness, and astigmatism by reshaping the cornea. "Wearing glasses was never really a big issue for me, but when I got engaged, I decided I didn’t want to wear glasses on my wedding day...which seems so silly to me now," she said.

Erin posing in glasses with her husband
Erin Orchard / Facebook / Via Facebook: photo

"The surgery experience itself was very uncomfortable and distressing. My surgeon instructed me to have a couple of alcoholic drinks before arriving, to reduce any nerves," she said. "I experienced a severe panic attack during the surgery and repeatedly asked the surgeon to stop. ... However, a staff member held me, and in approximately 15 minutes the surgery was complete and I left the clinic, still quite shaken. My partner said he had heard what sounded like cries coming from the operating room but didn’t go in because he was scared that by interrupting the procedure, he would put my health at risk."

A close-up of an eye during surgery
Penny Tweedie / Getty Images

Erin realized something was very wrong two to three days after her procedure. "My eyes felt as though they were burning and someone was pushing small shards of glass into them. It hurt even to blink, and simple occurrences, such as a small gust of wind, would cause me to fall to the ground in blinding pain. I was also experiencing significant light sensitivity, which led to my partner having to cover up the windows in our apartment."

Person drawing the blinds on a bright day
Ziggy1 / Getty Images / iStockphoto

"When my pain was at its worst, I scheduled an appointment [with my eye doctor] to seek his help. During this appointment, he consumed alcohol (both vodka and wine) whilst in the process of using equipment to test my eyes and treating me with medicated eye drops. He told me multiple times not to report him or tell anyone."

Erin Orchard / Facebook / Via Facebook: photo

"However, with the support of my GP, pain specialist, and psychologist, I made a formal complaint regarding his conduct. But a decision was made not to reprimand him in any way after he agreed not to repeat his behavior. I have appealed this outcome but am still waiting to hear back; I don’t want to get my hopes up again."

Erin now suffers from neuropathic corneal pain — a chronic condition that causes, in addition to pain, light/air sensitivity, foreign body sensation, and burning in the eyes. "My experience of neuropathic corneal pain and the involvement with my eye surgeon has negatively affected my mental health, and I have been diagnosed with depression, anxiety, and PTSD. I am no longer capable of maintaining full-time employment, I had to stop volunteer work, I experience significant levels of financial stress due to high medical costs, and I have had to put a lot of my dreams on hold, including starting a family of my own," she said.

A close-up of Erin and her husband
Erin Orchard / Facebook / Via Facebook: photo

"Some of the nerves in my right eye have healed, but unfortunately — due to the extent of my nerve damage overall — there has been no noticeable, positive change to my symptoms," Erin said. "I am grieving for the life I have lost, but also for the future I envisioned for myself. It hurts to see my savings used on medical expenses instead of my first home. I often find myself bursting into tears when someone posts a pregnancy announcement on social media. To make matters worse, crying increases my eye pain."

@erinorchard88

Burns #lasereyesurgery #lasikcomplication #prk #chronicpain #chronicillness #lasik #spoonietiktok #spoonie #eyepain #depression #insomnia #nervepain

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Erin is on myriad medications to help manage both her physical and psychological symptoms. One of these treatments is "autologous serum eye drops," which are drops made from Erin's own blood. "They sound completely gross, but they do actually help," she said.

An eye drop
Jrgen Hopf / Getty Images / EyeEm

Autologous eye drops are when a patient's blood is taken, red blood cells and clotting factors are removed, and a sterile solution is added to help patients receive nutrients that are naturally found in tears. 

Another survivor of laser eye surgery complications is 24-year-old Dana from Canada. She and Erin are in the same support group and have interacted with each other's videos through TikTok. Recently, Dana's TikTok explaining how she has to take eye drops made from her own blood went viral — drawing further attention to the issue of laser eye surgery complications.

@lifeinrosegold_

Eye drops made from my own blood?! #canadian #lasiksurgery #nervedamage #lasereyesurgery #lasik #chronicpainlife #medicationcheck

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BuzzFeed spoke to Dana, who is vocal about her life since eye surgery. "I wore contacts for 8 to 10 years, and with every day that passed, they became more and more of a problem. I knew something ‘better’ and ‘greater’ was out there: laser eye surgery. Little did I know, it would be the worst decision of my life. When my surgery day came, I was so excited, and it all went smoothly — until I realized it didn’t."

@lifeinrosegold_ / Via tiktok.com

Like Erin, Dana made the decision to undergo laser eye surgery, but not the same procedure. "I had SMILE, which stands for ‘small incision lenticule extraction,’" Dana explained. "Instead of the big flap they cut performing LASIK, it’s a small incision. When I had SMILE, it was introduced as an easier and safer option. I've been told if I had LASIK or PRK, which are two very commonly known surgeries, my nerve damage would be worse."

@lifeinrosegold_

What went wrong with my laser eye surgery?! #lasereyesurgery #canadian #neuropathicpain #nervedamage #smilesurgery #lasik #complications

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According to the Vision Eye Institute, SMILE is "recommended for people with a high degree of short-sightedness."

One of Dana's first symptoms post-surgery was extreme light sensitivity. "It caused awful headaches and made it really hard to be near even a window or look at a TV screen. They list this as a temporary side effect, but four years later, this is still one of my top two!" she said.

Dana photograph from TikTok up close
@lifeinrosegold_ / Via tiktok.com

"Within the first few months, sharp stabbing pains began. It kind of feels as though someone is taking a knife and stabbing you in the back of the eye, which then radiates up to the forehead. I was first diagnosed with dry eye disease, but after my dad flew to Boston with me to see a Harvard specialist [Dr. Pedram Hamrah, a corneal neuralgia specialist], I was diagnosed with nerve damage in my eyes."

To get relief, Dana must take pain medications daily. "There isn’t a pain medication directly for corneal neuralgia, so they commonly use anti-seizure medications to help calm the pain," she said. "I also have serum tears (eye drops made from my own blood), steroid eye drops, and lubricating eye drops. I find some relief in wearing sunglasses during the day and blue-light glasses while I'm on the computer. I apply heat masks when needed and always use a humidifier while I sleep. Although these help ease the pain, I am still left with sharp, dull, burning, stinging pains throughout the day and no permanent solution as of yet. Makeup, lights, the sun, and dry environmental conditions are all major pain triggers."

@lifeinrosegold_ / Via tiktok.com

For more information on laser eye surgery complications, BuzzFeed reached out to Dr. Brian Boxer Wachler, an ophthalmology specialist in Beverly Hills. "It’s really rare to have a chronic issue after [laser eye surgery]; I would say less than 1%," he told BuzzFeed. "Of course, there’s always the possibility that something was not done properly by the surgeon...or something occurred that was unexpected. A surgeon, I would say, likely was not expecting to see something like this happen, and it would be sort of an almost unexpected, rare complication when somebody has a chronic pain condition after the procedure."

Boxer Wachler explained that for SMILE — the procedure that Dana had — one of the biggest risk factors is if the patient has keratoconus, which is a condition where the cornea thins and gradually bulges outward, making a conelike shape. This is why it's important for a doctor to do a "corneal topography" on potential laser eye surgery candidates. A corneal topography is a medical imaging technique that provides a 3D picture of the cornea.

A keratoconus diagram
Sakurra / Getty Images / iStockphoto

For both PRK (the procedure Erin had) and SMILE (the procedure Dana had), having untreated dry eyes is also a risk factor for chronic pain following the procedure, according to Boxer Wachler. "If someone had dry eyes that weren’t treated, then had SMILE or PRK, then those procedures could make dry eyes worse."

Woman rubbing her dry eye
Tharakorn Arunothai / Getty Images / EyeEm

In addition to keratoconus and dry eyes, those who have high levels of myopia (nearsightedness; between -8 and -20 diopters) or hyperopia (farsightedness) aren't good candidates for laser eye surgery. Candidates under the age of 20 may still have changing eye prescriptions, so doctors recommend waiting until eyesight has stabilized for at least a year. Finally, those with uncontrolled autoimmune disorders should stay away from laser eye surgery, including those who have lupus or a family history of keratoconus. This is because they are more prone to having complications post-surgery.

Guy looking into an eye-checking machine
Thomas Northcut / Getty Images

Boxer Wachler said his first line of treatment if a patient comes to him with postoperative pain or discomfort is flax oil pills. "I have all my patients for procedures take oral flax oil capsules, which are usually phenomenal at lubricating the eye internally from within," he said. "Another thing that’s used commonly is called punctal plugs — those are little plugs that we place in the corner of the eyelid as a little drainage port, so it keeps the tears on the eye longer."

If you're someone considering laser eye surgery, it's important to go to a qualified surgeon, ideally one who has performed over 10,000 laser eye surgeries. The American Academy of Ophthalmology is a great resource. Surgeon consultations should not feel like a sales pitch but should feel like an informed conversation that answers all your questions — and surgeons should never overpromise results. Arm yourself with information, and ask thorough questions.

An eye doctor doing an exam
Westend61 / Getty Images / Westend61

Here is a list of detailed questions to ask your ophthalmologist before considering laser eye surgery. 

"It’s important that people feel comfortable," Boxer Wachler said. "And if somebody’s not comfortable, or I have a patient who — even though they’re a great candidate — they’re not comfortable, I still wouldn’t want them to go ahead with something unless they’re comfortable with it... I think [finding] somebody who’s really highly qualified and experienced is important, and being familiar with the potential side effects. ... No surgeon ever expects there to be a complication, but an experienced surgeon will know how to treat it if it does occur."

A doctor explaining something to a patient
John Fedele / Getty Images

Boxer Wachler also said it's important to equip people "with the information to ask the doctor to evaluate them and to give them a corneal topography test, because that is a test of the shape of the cornea. That’s how keratoconus is diagnosed. So that has to be done before having laser eye surgery."

A corneal topography
Bluecinema / Getty Images

To hear more updates about Erin and Dana's stories, be sure to follow them on TikTok. "I feel proud of the content we’re each posting," Erin said. "It’s not easy to share your chronic-pain journey in such a public way, but together, we’re reaching a lot of people and informing them of potential laser eye surgery risks they may not have considered."

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