Beating Thyroid Eye Disease with a Team Approach
MADISON - These days, Kim Neisewander is truly happy - it's a glow that surrounds her, and it's apparent the moment she enters a room.
A vibrant, attractive woman in her late 40s, she shows just the slightest hint of shyness at meeting new people - a remnant, perhaps, of the lengthy ordeal she's been through, which affected her vision, her appearance, and ultimately her ability to live her life.
"I've always been happy with myself, I liked how I looked, and I've always been very confident. I was able to walk in anywhere like I owned the place, and I felt I was so blessed," Neisewander says. "Never in my wildest dreams did I imagine that I would ever have to go through anything like what I've gone through. I've had five years of my life taken from me by Graves' disease."
The successful resolution of her ordeal required the combined medical and surgical expertise of a multidisciplinary team in the UW Department of Ophthalmology and Visual Sciences: neuro-ophthalmologist Leonard Levin, MD, PhD; pediatric and adult strabismus specialist Burton Kushner, MD; and ophthalmic facial plastic surgeon Mark Lucarelli, MD. Through a carefully planned sequence of surgeries, these three UW experts are restoring Neisewander's vision and appearance, enabling her to enter the world again with confidence, instead of hiding from it.
Five years ago, she began experiencing a bewildering cascade of debilitating symptoms.
"I was having heart palpitations. My body was shaking from the inside out. I had high blood pressure. I lost a significant amount of weight. At that point I weighed 98 pounds," Neisewander recalls. "I was very hyper, I couldn't stop moving, and I wasn't sleeping well. But when I sat down, I would fall asleep in a second. My eyes were bulging, watering, very sensitive to light. I thought I was going crazy. I felt very energetic but, in reality, it was my thyroid going out of control."
Neisewander was diagnosed with hyperthyroidism caused by Graves' disease, an autoimmune condition in which the body's immune system attacks the thyroid gland, causing it to release too much thyroid hormone into the body. Women are seven times more likely than men to develop Graves' disease, the symptoms of which range from irregular heartbeat and/or hypertension to anxiety, memory lapses, insomnia, irregular periods and hives, among many others.
Graves' disease can also affect the eyes, as an inflammatory condition called "thyroid eye disease" or "Graves' ophthalmopathy," in which the eye muscles become enlarged and inelastic, and the normal fat deposits behind the eye become inflamed and expand. Thyroid eye disease can also distort the eyelids, cause the eyes to bulge forward, throw the eyes out of alignment and even cause permanent vision loss.
Neisewander first noticed a change in her vision about three years ago. An endocrinologist had treated her overactive thyroid, but now the disease had spread to her eyes: the inflammation of Graves' ophthalmopathy was affecting her eye muscles, which were pulling her eyes out of alignment.
This resulted in a vertical diplopia, or double vision, in which Neisewander saw two of everything, with one of the two images above the other. The disease was also stiffening her eyelid muscles, preventing her eyelids from closing completely and resulting in drying of her corneas. She consulted three ophthalmologists, with no success.
Then an ophthalmologist in Florida, where she and her husband have a vacation home, prescribed the addition of prisms to the lenses of the sunglasses she wore because of her eyes' sensitivity to light; prisms, which bend incoming light, are used in lenses to help the eyes work together.
"My vision was changing so rapidly that by the time my new glasses arrived, I needed new prisms. The prisms helped with the double vision, so I didn't have the headaches and nausea and the feeling of helplessness," Neisewander says. "But the swelling and double vision kept getting worse, and I kept needing stronger and stronger prisms, sometimes twice a month."
In December 2005 - acting on a recommendation from her sister-in-law, whose son was successfully treated by UW Health retina specialist Michael Nork, MD - Neisewander saw Dr. Levin in the UW Health neuro-ophthalmology service.
"Dr. Levin said, ‘We can fix you, we have a great team here, but you're going to have to be patient. With this disease, it's going to take some time, but it will eventually burn itself out,' " Neisewander recalls. "He was very good. He was compassionate and kind."
Dr. Levin first referred her to Burton Kushner, MD, an internationally recognized strabismus surgeon, to address her double vision, but any alignment surgery needed to wait until her disease stabilized. In the meantime, Neisewander was experiencing even more serious ocular symptoms: a visual field defect (a loss of vision in one sector of her visual field) and loss of color vision, all in her right eye. This indicated compression of the optic nerve - the pressure in both her eyes was increasing, due to the expanding muscles and fat deposits. Neisewander needed orbital decompression surgery to prevent permanent damage to her optic nerve. Dr. Levin referred her to oculoplastic surgeion Mark Lucarelli, MD.
"Kim's case was a very complicated one, with challenging solutions. She had a serious case of thyroid eye disease that required a thoughtful, stepwise approach, to preserve her vision, to allow her to see straight, and to erase as much of the disfigurement as possible," Dr. Lucarelli says.
Dr. Kushner agrees, adding, "We're very fortunate to have a multidisciplinary team available here. Optimum management of Graves' eye disease often requires oculoplastics, strabismus and neuro-ophthalmology subspecialists, which you're not always able to find in a single office setting."
In March 2007, Dr. Lucarelli performed Neisewander's orbital decompression surgery, in which he removed bone from both sides of her right eye socket, enlarging the socket into the neighboring sinus and bone cavities and allowing the swollen muscles and fat to expand into the newly created space. Her right eye moved to a normal position and the compression on the optic nerve was resolved.
In June 2007, with her disease stabilized, Neisewander underwent eye alignment surgery by Dr. Kushner, who corrected her vertical double vision. Neisewander was delighted.
"It was a wonderful day, because I no longer needed the prisms. The neatest thing for me was I could see my loved ones. I saw one, instead of two of each of them," she says.
Dr. Lucarelli next performed reconstructive surgery on Neisewander's lower eyelids in December 2007, to release the scarred muscles that were pulling her lower lids down. During this surgery, grafts of mucous membrane from her mouth were used to lengthen the scarred eyelid. This surgery had the biggest impact so far in improving her appearance.
"When the bandages came off, I cried, and when I got home, my daughter cried. My granddaughter said, ‘Grandma, you look normal again,'" Neisewander says.
Neisewander still has two surgeries to go, Dr. Lucarelli notes, to do some reconstruction of her upper eyelids, which still don't close completely, and to remove the puffiness around the eyes caused by the disease.
"Kim was a complex patient, who required this multidisciplinary approach. Thyroid eye disease is a huge burden for patients. It can be severely disfiguring and very unpredictable, making patients feel frustrated and vulnerable. But at this point Kim is back out in life, doing the things that she likes to do, and that's wonderful to see," Dr. Lucarelli says.
"I thank God for everything the doctors at UW Health in Madison have been doing for me, for Dr. Lucarelli's talent in doing everything that had to be done," Neisewander says. "This disease is devastating; it can bring you to your knees. But now I'm getting my life back. I'm getting stronger every day and I love it."
Date Published: 10/12/2007