Adults with Strabismus Service Patient Stories

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Steven: A New Look On Life

Steven McCarthy never imagined he would someday drive without heavy glasses, participate in sports or be able to sit through a movie or play without developing headaches.

Painful prism glasses

During the years after he developed strabismus (misaligned eyes), Steven's condition became so bad that he saw double of everything beyond eight feet in front of him. The strength of his prism glasses, which helped him see normally, was increased in increments until he reached the highest strength available.

"The glasses were so heavy, and after wearing them a short time, they gave me a headache," Steven said. "Plus, you can't use them too much or, I was told, your eyes have the ability to adjust to them and could become dependent on them to see. My condition could worsen if I wasn't careful."

Onset of strabismus

Steven, now 45, developed strabismus during adolescence, which is atypical. Most people are either born with the condition or it can result from disease or injury. At the time, his ophthalmologist suspected a brain tumor and performed tests to rule out cancer.

"It was assumed that it was either a brain tumor or I hit my head in some way, but I have no recollection of hitting my head," he said.

After ruling out disease or injury, it was determined that the condition probably had been there all his life but worsened at puberty.

Little optimism

Steven was told by several physicians that nothing could be done to correct the problem. One ophthalmologist, who did say surgery might be an option, outlined a plan for three or four operations. But the doctor wasn't optimistic about the outcome.

"He did not seem very hopeful," Steven said. "I probably would have gone through with it if he seemed more confident that it might actually work. So, because of his lack of confidence, I did nothing."

Daily struggles

Instead, Steven spent years struggling with his condition. He recalls that in college he always had to sit in the very front of the class so that he could see the blackboard or even the instructor. He couldn't play sports because his vision affected his ability to see the ball.

He couldn't swim from one end of the pool to the other and he continually struggled with day-to-day tasks. For instance, finding his car after leaving the supermarket or shopping mall was always an annoying problem. At work, he always looked down to avoid double vision and headaches. His inability to make eye contact was often misconstrued by coworkers.

"The condition played havoc with my self image," he said. "Its effect on my physical appearance seemed to me like a fatal flaw. In my mind, it was the first thing that anybody saw."

Children's offers promise

Dr David Hunter It wasn't until 2004 that Steven was given any hope. "My headaches were getting worse and my glasses were getting thicker," he said. "And I saw an ophthalmologist in Boston who said, and I remember her exact words, 'There 's a new doctor in town and he specializes in your condition.'"

Immediately, Steven said, he booked an appointment at Boston Children's Hospital with David G. Hunter, MD, PhD.

"When I met Dr. Hunter, I felt like I met a savior," he said. "He was confident, capable, secure and comforting. He had a plethora of knowledge about the condition and he seemed to understand how I was looking at the world. He made me feel comfortable about the diagnosis and comfortable with the treatment."

The procedure

In June of 2004, Steven had eye muscle surgery as an outpatient at Boston Children's at Lexington. During the procedure, which is performed under general anesthesia, the eye muscle or muscles causing the misalignment are separated from the eye and reattached to a new position. In most adults, adjustable sutures are used that allow surgeons to make further adjustments to the eye if needed after the patient wakes up.

The procedure itself, Steven said, lasted around 40 minutes. He adds that he doesn't recall feeling any pain when adjustments were made to the sutures after waking.

A new life

"For me, this was a miraculous, life changing event," Steven said. "I have no double vision whatsoever. I can look at things at a great distance. I'm a better driver and I don't need to wear glasses."

"When I meet people I have more confidence now and I can look them straight in the eye," he said. "But perhaps one of the biggest benefits is that I can play ball with my 13-year-old son."

 

Janice: Starting Again

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Janice Pauk thought that she was having an anxiety attack when she was driving and began to see red flashes before her. All of a sudden, she couldn't tell how far she was from the car in front of her.

She was relieved to make it home without an incident but was left with terrible vision problems. The incident sparked a five-year struggle to restore normal vision and search for answers.

Deteriorating vision

"I had no depth perception," she said. "And if I looked to the right or the left, I would see double."

As her symptoms worsened, Janice noticed that her right eye was crossing. She was also experiencing frequent falls because of her vision restriction. Over time, she said, she feared she was going blind.

Searching for a cause

Janice's doctor in Florida, where she was living at the time, prescribed prism lenses that helped but made her glasses very heavy, she said. Meanwhile, to this day, she has never fully understood what caused the strabismus.

"I had had mini-strokes in the past, so perhaps that caused it," Janice said. "I have diabetes but have been told that diabetes does not cause this. My husband's neurologist thought I might have myasthenia gravis (a neuromuscular disorder)."

In fact, she said she was ready to join a support group for myasthenia gravis when she moved to Massachusetts.

Referred to Children's

Dr David Hunter When Janice came to Massachusetts she was still experiencing the same debilitating vision problems.

"By the time I moved I was wearing a patch over my right eye," she said. "That seemed to be the only way to block out the double vision."

Fortunately, Janice's ophthalmologist in Athol, MA referred her to David G. Hunter, MD, PhD, Ophthalmologist-in-Chief at Boston Children's Hospital. Dr. Hunter, a pediatric ophthalmologist, also specializes in treating adults with strabismus.

"The moment I met Dr. Hunter I liked him," Janice said. "He was very kind and really seemed to know what he was talking about. Best of all, he told me that yes, he would be able to help me. I also knew that Children's Hospital is affiliated with Harvard Medical School, so I felt that I was in the best hands."

The operation

Janice had eye muscle surgery under general anesthesia in January 2005. The eye muscles that were causing Janice's eye to cross were separated from the eye and reattached to a new position with adjustable sutures.

In most adults, adjustable sutures are used to allow surgeons to make further adjustments to the eye if needed after the patient wakes up.

Thriving after treatment

"It was a huge success and a huge relief for me," Janice said. "I was able to take a trip to Missouri in April, on my own, to visit my aunt. For the first time in years, I was able to drive myself to the airport."

"(The strabismus) basically stopped me and stopped my life for five years," she said. "And that was really a problem because there's so many things I want to do in my life. Now, I'm doing them."

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Jill: No More Worrying

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Jill Braverman was born with strabismus and underwent eye muscle surgery as a baby to correct the problem. Luckily, the operation was successful and her vision developed normally in both eyes. She lived most of her life without any problems. But at age 28, she began to develop double vision. She also began to notice that at times her eye appeared to be slightly misaligned.

Double vision takes a toll

"I noticed that if I stared at the computer too long I would see double," she said. "In pictures, my eye looked slightly turned. The double vision got progressively worse until it began to affect everything I did: my dance teaching, swimming, exercising, driving and my social life."

Her problem, Jill said, wasn't that her eye was noticeable, because most of the time her eye did not appear to be out of line. It was more that she had to constantly adjust her head position so that she could see straight. For instance, when teaching dance, she would have to tuck her chin down very low into her chest so that she could see her own feet.

"When you have double vision it becomes very difficult to concentrate," she said. "It's very distracting to the point where you almost feel disconnected from everything around you."

Hesitant to have surgery

When Jill's symptoms began, she was living in New York City. She saw a few ophthalmologists but felt uncomfortable having surgery.

"I saw several ophthalmologists but I didn't take any action because, quite frankly, I didn't like their personalities and I didn't feel I could trust them," said Jill.

Feeling comfortable at Boston Children's

David Hunter, MD, Adults with Strabismus ServiceDr David Hunter It wasn't until a couple of years later, after moving to the Boston area, that Jill was referred to David G. Hunter, MD, PhD, Ophthalmologist-in-Chief at Boston Children's Hospital. Dr. Hunter sees many adults with strabismus who come to the hospital's Eye Center.

"When I met Dr. Hunter, I immediately felt comfortable," she said. "He has an amazing bedside manner and you can tell that he really cares about his patients. He was very clear with me about the operation itself, the success rates and what they mean. I felt like he understood my concerns and listened to me."

In fact, Jill said, Dr. Hunter explained that her childhood eye surgery was not a failure.

"He explained that since I had my first operation as a baby, I was actually lucky that my eyes stayed perfectly straight as long as they did and that it was fairly common for the eye to eventually wander again," said Jill. "Prior to that, I had the feeling that my first operation failed and that perhaps some other bigger health problem caused it to fail. No one else bothered to explain that what happened was perfectly normal."

Operation fears

Before deciding on surgery, Dr. Hunter prescribed prism lenses for Jill's glasses to see if that would help her double vision. Although it did help, Jill decided she didn't want to be dependent on the glasses and opted for eye muscle surgery.

Her biggest fear, she said, was a potential bad reaction to general anesthesia because in a previous operation for an unrelated problem she became very nauseous.

"The anesthesiologist was absolutely wonderful," said Jill. "She listened to what I had to say. I told her about the medications that were used previously and she explained to me what she was going to do differently and I felt completely fine after the surgery."

Above and beyond

The day after her follow-up appointment a few weeks after the surgery, Jill suddenly saw halos around lights.

"So at 7 o'clock at night on a Friday, I called Dr. Hunter because I was seeing a halo around the light," she said. "I told him that I didn't think it was a big deal and he said, 'No, you have to come back in now.' So he wound up staying late to help me with this."

These "halos" can be a sign of glaucoma in some cases. It turned out that Jill had gotten a piece of sawdust in her eye, which was easily removed, and the halo went away.

Successful results

Jill said she is happy with the outcome of her surgery and the overall experience she had with Dr. Hunter and the Children's team.

"From beginning to end, I couldn't believe how easy the whole thing was," she said. "I was there for a total of around three hours. When I woke up, the problem was just gone and I immediately had a good result. I'm driving fine and doing all the things I want to do without having to worry about double vision. I would definitely recommend that anyone with strabismus go to Children's."

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Janet: Discovering A Cure Exists

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For nearly two years after taking a terrible fall that left her with strabismus (misaligned eyes), Janet Gurski, 72, searched for treatment that would restore her depth perception and alleviate the double vision that became unbearable. Yet, she was repeatedly told that there was no cure and that she would have to live with it.

Seeing double

When the accident occurred, Janet fell face first into a plant stand after rushing up the stairs to answer the phone. Initially, she had no eye symptoms and was relieved to learn that X-rays showed no damage to her prosthetic hips and knees. It wasn't until several months later that symptoms of strabismus slowly emerged and progressed.

First, she began seeing two of everything. Then, when she drove, it became difficult to judge the distance between her car and cars around her. It became impossible to follow print across the page of a newspaper, read a book and watch television.

"I would see the TV image and the same image above it," she said in an interview. "Those news headlines that run along the bottom of the screen on some shows became particularly annoying when you have to see two of them."

Losing independence

But the worst part, Janet said, was her increasing dependence on other people, particularly when she had to go somewhere.

"I didn't want to take any chances driving and my family was afraid for my safety and the safety of others," she said. "So I only drove very short distances and had to be sure I was home before dark. Basically, if I needed to go anywhere, I had to have my family or a friend drive me."

A disheartening diagnosis

Initially, Janet saw an optometrist and two different ophthalmologists. Ophthalmologists diagnosed her with strabismus caused by trauma to an eye nerve that controlled muscles that move the eye. The first ophthalmologist she saw said she'd have to play the waiting game.

"He said (the condition) would either stay the same, get worse or get better," she said. "To me, that wasn't much help."

Janet was told that her only hope was to find a lens prescription to lessen the symptoms. When she tried using a prism in one lens of her glasses, the symptoms remained the same. Using prisms in both of her lenses decreased the double vision but did nothing to restore her peripheral vision.

A third ophthalmologist at the Lahey Clinic Medical Center prescribed stronger lenses which seemed to help more. Because Janet had to switch to bifocal lenses, however, she was told the stronger lenses wouldn't work with bifocals. It was this ophthalmologist who told her that pediatric ophthalmologists at Boston Children's Hospital specialize in eye muscle surgery to correct strabismus and may be able to help her. He referred her to Linda R. Dagi, MD, who routinely performs eye muscle surgery on adults.

Hope at Children's

"Dr. Dagi is a wonderful doctor and I want other people who have similar problems to know that she exists," Janet said. "She explained that the nerve was causing problems in two eye muscles. During the surgery, they would adjust the muscles so that they could make the weaker muscle a little stronger and the stronger muscle a little weaker. This was the first time I was given hope that my problem could be fixed and I was elated."

Janet underwent surgery at the Beth Israel Deaconess Medical Center, which is adjacent to Children's Hospital and is one of several off-site locations where adult patients are treated by Children's physicians.

She said her biggest concern going into surgery was anesthesia and the terrible nausea she experienced in past operations. She explained her fears to the anesthesiologist in a preoperative meeting and she was given special medication to prevent the vomiting.

A successful cure

"Before I knew it, the surgery was over and I was in recovery and had no problems with the anesthesia," Janet said. "And now, I'm really okay. I don't have double vision and I can drive long distances without any problems."

Still, she said, she is frustrated when she thinks of all the time wasted before she had the corrective surgery.

"I just wish I knew about Dr. Dagi sooner. It would have helped save a lot of people a lot of worry and heartache and it would have saved me from a lot of sitting at home," she said. "I want to be able to share my story so that people know that yes, something can be done and it's my hope that they don't have to wait as long as I did to find the right doctor."

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Lorraine: Thank You for This Miracle!

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Dear Boston Children's Hospital,

I am writing to express my gratitude towards one of your talented and compassionate surgeons, Dr. Linda Dagi.

In September 2005, after a radio-frequency lesion surgery performed at another hospital for the condition tic deleroux, I was left with severe nerve damage related to the muscles controlling my right eye. When I came out of anesthesia, I was severely cross-eyed, had double-vision, and was relegated to wearing an eye patch. Numerous visits to ophthalmology specialists gave little hope for a good prognosis. I had been told that the damage done was severe and that the odds against recovery, or any significant improvement were poor. I was faced with losing my independence and dealing with a greatly reduced quality of life.

As a last resort, I was given Dr. Dagi's name and an appointment was set early in the New Year. I was terrified and dreaded going to this meeting. I was certain, as I had been assured and convinced nothing could be done, that she would only confirm the previous physician's findings and how wrong I was! Dr. Dagi, within the first 10 minutes of my exam, said, "I can definitely help you." My daughter and I couldn't believe her words. When we realized what she'd said, we started crying with relief and joy! Dr. Dagi went on to explain the procedure in which she would correct my double-vision (caused by strabismus). By relocating the muscles to the eye, she could straighten the eye and with minimal risk, I would be able to see a single image again!

While I was excited at the prospect of this development, I was also extremely nervous about going through another operation ... with the previous surgery leaving me in the predicament I was in, who could blame me? Dr. Dagi was so compassionate, kind and utterly enthusiastic about being able to improve my strabismus. I was compelled and agreed to move forward.

In mid-June, after numerous visits to Dr. Dagi's office and her team, I had the eye-muscle surgery and awoke to my old life once again! No more patch! No more dropping things! I could drive again; sew again, live normally again! Thank God! This surgery, surgeon and hospital have renewed my inner spirit and independence and I can't thank everyone enough for this miracle!

Sincerely,

Lorraine Pike, 71 years young!

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