It’s taken a group effort from many people to save Cindy Sperr’s eyesight, but she remembers one moment in particular as the key to why she can still see.
“This is where it started,” she said, sitting in the examination room of North Woods Optics in Forest Lake.
Sperr has serpiginous choroditis, a rare inflammatory disease, but she didn’t know that for a long time. In 2011, all she knew was she was sick. Some of her primary symptoms were flashes in her vision, ear pain and temporary sight and hearing loss. Her blood work at various health care facilities said she had some kind of inflammation, but doctors couldn’t figure out where. She was frustrated and often miserable.
“It was like looking through strobe lights,” Sperr said of the flashing.
Sperr currently lives in Shafer and works as a teacher with Anoka County Community Action Programs Headstart, but she was a longtime Forest Lake resident before her move. She’d visited Dr. Kevin Bahr at North Woods Optics over the years for eye checkups and lenses, and on Oct. 9, 2012, she came in for an eye exam. It was here that a routine North Woods practice proved life-changing for Sperr.
“Every patient who comes gets photos of the back of their eye,” Bahr said, explaining that the photos serve as both an aid for the patient to visualize his or her current optical state and, more importantly, as a handy comparison tool for Bahr. Notes on an eye exam reread years later may yield ambiguity, he said, but putting up a photo side by side is a tangible, easy way to notice differences.
When comparing Sperr’s 2012 photos to pictures taken two years earlier, Bahr noticed differences so stark he checked to make sure he wasn’t comparing two different eyes by mistake. In two years’ time, an inflammation had spread through Sperr’s retinas – the nerve layers on the back of her eyes – causing some permanent blindness to her peripheral vision. Looking at the drastic change, Bahr immediately considered serpiginous choroditis, though due to the disease’s rarity, he quickly referred Sperr to some specialists to make sure.
“Most retinal specialists who see the cream of the crop of weird stuff never see this,” he said.
To Sperr, however, the discovery of the inflammation itself was a revelation, a sign she might be able to get relief.
After seeing Minnesotan specialists at VitreoRetinal Surgery and Mayo Clinic, Sperr’s diagnosis was confirmed. Mayo treated her for about a year, including regular steroid injections behind her eyes, but she was still experiencing flare-ups of the disease every couple of months. After some research, she was referred to the Massachusetts Eye Research and Surgery Institution, one of the foremost eye institutions in the country, in October 2013.
All of Sperr’s doctors knew time was of the essence if she wanted to keep her sight. Serpiginous choroditis is a mystifying disease because it has no known cause and no known cure. Sperr has tried to keep her stress levels low and her diet healthy, but in the past, the disease would trigger without warning, usually manifesting itself with prolonged flashing in her sight. When the retina becomes inflamed due to serpiginous choroditis, the inflammation spreads quickly and causes permanent blindness wherever it stretches.
“It’s kind of like a Serengeti grass fire,” Bahr said.
In both of Sperr’s eyes, the inflammation is not far from the nerves that allow her to see straight ahead, a sliver away from destroying her sight altogether. When she flew east to visit MERSI, she received a dire prognosis: If she didn’t start a drastic treatment procedure soon, she’d be blind by Christmas.
“If someone told you, ‘You have 60 days to see,’ it changes your thinking dramatically,’” Sperr said.
The choice to pursue a more aggressive treatment was not an easy one, however. To attempt to stop her inflammations from spreading, Sperr would need to undergo chemotherapy every day for the foreseeable future – a process that could leave her with terminal cancer and not end up saving her sight.
Most people with serpiginous choroditis choose to go blind than go through with the risky procedure, but Sperr thought about what she valued in life. She wanted to see her kids get married, she wanted to see her hoped-for grandchildren, and she wanted to keep working with the kids at her job. Some people who know they’re going blind make a bucket list of things they want to see before their sight goes, but Sperr said she had a realization: “Everything I need to see is right in front of me.” She chose the chemo.
For the next two years, Sperr received radiation treatments every day, along with continued frequent injections, diet changes and check-ups at Mayo. Through it all, Sperr relied on Bahr as a trusted doctor who she could go to if she was concerned about her condition or a new symptom popped up.
“Dr. Bahr has always made himself available to me on an emergency (basis),” she said.
Though her treatment was grueling, Sperr looked for bright spots. Her flare-ups stopped, and soon after her treatment began, she learned that her daughter was pregnant with twins. The girls have since been born and are two of Sperr’s biggest joys.
Those points of light were important for Sperr because she knew that stress or a bad attitude could have an effect on her health. Her doctors at MERSI impressed on her the importance of a good outlook on the success of her treatment, with one telling her, “The prescription I send you home with is two words: ‘Positive’ and ‘optimistic.’”
So she kept her spirits up, and she kept her mind and body busy, continuing to work and setting up a charity called Sunglasses For Tots, which gets protective lenses to young kids in and around the Forest Lake area. The idea for Sunglasses For Tots began germinating after Sperr met a 5-year-old student who was staying positive while undergoing the same rigorous chemotherapy as she was to treat a cancer diagnosis. His attitude inspired Sperr to face her own trials with bravery and positivity.
“I never missed a day of work on chemo,” she said.
In October 2015, after two years of aggressive treatment, Sperr’s doctors halted her chemotherapy. In June of this year, they declared her in remission. The parts of her retina that were hurt by inflammation will never revert to normal, but her eyes have been inflammation-free for almost three years. Though Bahr is quick to downplay his role in her sight retention, Sperr is insistent that his initial detection and ongoing consultation were key. Without him, she said, “I wouldn’t have seen my grandkids.”
These days, Sperr is still a regular guest at Mayo, sometimes for injections but more often for observation. The cancer she risked by undergoing chemotherapy could still appear, and it’s even possible that the choroditis could return, though Sperr’s trained herself to believe it won’t. She still goes to North Woods Optics for regular check-ups with Bahr, who said that cases like Sperr’s serve as a reminder that early detection is the best way to deal with burgeoning eye problems.
“Come in and get checked if you think something’s wrong,” he urged.
Whatever the future may hold, Sperr’s sight lasted until that Christmas, and then to next Christmas and the one after that. She’s seen her loved ones for longer than doctors once expected, and every day she wakes up with her sight is a day in which she’s grateful.
“The power of positive thinking is a good thing,” she said.
Learn more about Sunglasses For Tots at gofundme.com/2geatj2c. Sunglasses can be sent to Sunglasses for Tots, P.O. Box 1033, Forest Lake, MN 55025.