DIXON – Several years ago, Kim Neisewander could have had a role in a horror movie.
Her voice was deep and raspy. Her skin hung off her bones, and her hair was thin and brittle. Her eyes bulged out of their sockets.
“I was ugly,” she said. “I felt fine, and I thought I looked fine until I looked in the mirror. I was not myself.”
Neisewander was diagnosed with Graves’ disease, an autoimmune disorder that causes the thyroid to produce excessive hormones and sends every function of the body into overdrive.
She suffered from a number of debilitating symptoms for years until she met a team of doctors at University of Wisconsin Hospital in Madison and underwent a series of surgeries to restore her life to normal.
Today, Neisewander, 52, of Dixon, is a strong, confident and grateful woman who wants to bring awareness to Graves’ disease and help people find their life after illness.
‘Something was wrong’
In late 2003 and early 2004, Neisewander experienced a bewildering onslaught of strange and serious health problems: heart palpitations, high blood pressure, extreme weight loss, irregular menstrual periods, and vision problems.
“My body was shaking from the inside out,” she recalls. “I weighed 98 pounds. I couldn’t stop moving, and I wasn’t sleeping well, but I could just shut off in a second.
“I could feel something was wrong with me, but I wasn’t sick,” she said. “My husband would say, ‘Honey, are you all right?’ and I would say, ‘Yeah, I’m fine, but I’m not all right. Something’s not right. Something’s happening in my body.’”
Friends noticed. Family noticed. But Neisewander shrugged off their concerns — until her son confronted her about it.
Neisewander finally went to an endocrinologist in Rockford who diagnosed her with Graves’ disease.
“He was 99.9 percent sure it was Graves’ disease – and a very severe case at that,” she said. “I was near a thyroid storm – a total-body shutdown. I had no choice but to kill the thyroid before it killed me. ... I decided I was going to put my big-girl pants on and fight like hell.”
Within a couple of months, the overactive thyroid was under control, but the disease had settled in her eyes as Graves’ ophthalmopathy. Sometimes known as thyroid eye disease, it’s an inflammatory condition in which the eye muscles are enlarged and inelastic and the fat deposits behind the eyes are inflamed and swollen, causing the eyes to bulge and the eyelids to stretch.
Neisewander experienced vision problems. The disease pulled her eye muscles in opposite directions, pulling her eyes out of alignment and resulting in vertical diplopia, or double vision, in which she saw two of everything, one on top of the other. The disease also stiffened her eyelid muscles, preventing them from closing completely.
“I just couldn’t see real clearly,” she recalls. “I got in the habit of closing one eye so my vision was single, not double.”
She consulted three local eye doctors, but they all dismissed her; they told her it was age, menopause or her imagination. She consulted an ophthalmologist in Sarasota, Fla., where she and her husband have a vacation home, and he prescribed the addition of prisms to the lenses of her glasses to bend incoming light and help the eyes work together — which helped for only a short time. As the swelling and double vision got worse, she required stronger prisms.
Neisewander was beside herself.
“I was unable to make anyone understand what I was going through,” she says.
‘Am I going to go blind?’
In December 2005, acting on a recommendation from her sister-in-law, whose son was successfully treated there, Neisewander saw a neuro-ophthalmologist at University of Wisconsin Hospital in Madison.
“He was so kind and compassionate – and understanding; he explained what had happened and why it happened,” she recalls. “I asked him, ‘Am I going to go blind?’ and he said: ‘You could, but you’re not going to. We’re going to fix you before that happens.’”
Dr. Leonard Levin urged her to be patient and give the disease 18 months to stabilize. But Neisewander experienced more crushing vision problems: a loss of vision in one sector of her visual field and a loss of color vision, all in her right eye; the disease had caused the muscles and fat deposits around the eye to swell and, as a result, put pressure on her optic nerve.
In March 2007, Neisewander had orbital decompression surgery. Dr. Mark Lucarelli removed bone from both sides of her eye socket to make room for the swollen muscles and fat deposits and relieve the pressure on her optic nerve.
In June 2007, Neisewander had strabismus surgery to align her eyes and correct her double vision. Dr. Burton Kushner removed her eyeballs – “he sat them right on my cheeks” – detached the affected muscles from the eyes, and reattached them farther back on the eyes to lengthen them and bring the eyes into alignment.
That December, Neisewander had lower lid retraction surgery to release the scarred muscles that pulled her lower lids down, and in April 2008, she had upper lid retraction surgery. Lucarelli removed scar tissue and recessed the muscles in both eyes.
“That [reconstructive surgery] had the biggest impact on her appearance and on her outlook,” Lucarelli said. “That was a real milestone for her.
“It was really wonderful to know the horrible saga she went through was over and to see her living life on her terms.”
Neisewander felt – and looked – like herself again.
“They gave me back my life,” she said. “I was normal again. I was so grateful. I felt so blessed.”
‘You can get your life back’
Today, Neisewander is a bubbly, blond 50-something. She has some residual sagging skin and crow’s feet around her eyes, and she wants to fix them, eventually. But she is just grateful to have her life back.
Neisewander owns Doggies Country Club on U.S. Route 30 west of Sterling. She also counsels patients diagnosed with Graves’ disease through the University of Wisconsin Hospital and Clinics.
“I’m very understanding of where they’re at,” she said. “Some of them are scared. … I just tell them you can get your life back to the way it was, … but you have to be patient and have faith.”
Lucarelli appreciates the help, as Neisewander is a valuable resource for patients, who often feel isolated and helpless.
“It’s wonderful and over-the-top generous for her to take herself back to these chapters of her life that were not at all pleasant and share that story with people,” he said. “It’s been helpful to numerous patients.”
Neisewander just wants to give back to the doctors and the hospital that gave her so much.
“My life is good,” she says. “I care for my husband. I’m a mom, a grandma, a pet mom of five furry children. My life is full. I count my blessings every day.
“If this helps one person with this disease, then I feel like I’ve done something good.”