When E. Marie Brierley talks about her life, she divides it into "before" and "after" — the periods before and after receiving care at Stanford.

In the "before" period, she endured more than two decades of neck, shoulder and arm pain; distorted vision from an untreated eye disorder; difficulty functioning normally; and fragmented medical care by an array of specialists, whose treatments failed to bring lasting relief.

Now, her vision is close to normal, her pain is minimal, and she is enjoying simple pleasures and new hobbies, thanks to coordinated, comprehensive care by specialists at Stanford Hospital & Clinics.

"This is the first time I've had the hope of a normal life since I was 25," said Brierley, a 48-year-old former IT project manager living in Sacramento. "I feel like I have a whole new life." For her turnaround, she credits Stanford clinicians who "treated me like a person, not a node on a decision tree. The doctors here really listened to me."

Brierley's problems began as a child growing up in Marin, when she developed oculomotor nerve palsy, a condition resulting from damage to the third cranial nerve that causes the eyes to be misaligned. Her left eye had a crooked appearance, and children teased her, calling her a "one-eyed frog." The misaligned eye is a condition called strabismus, a disorder which often results in double vision and limited depth perception.
 
At age 14, Brierley had surgery on her left eye, which improved the eye's appearance but failed to correct her misaligned vision. In fact, her double vision got worse.

These visual distortions made Brierley's world, literally, a scary-looking place. She saw two of everything, and could never be sure which object was real. Seeing a suddenly moving object threw her off balance. "I always felt on guard and unsafe. I was under a visual assault," she said.

Trying to function with some normalcy, she used tricks, like following someone in front of her in order to walk straight. Meanwhile, in an attempt to ease her double vision, she developed crooked, twisting postures of her head, neck and torso. To various degrees, depending on what she was doing, her torso would lean to the right, her face would turn to the left, and her chin would tilt up.

For years, Brierley was unaware of these so-called "compensatory postures" that her body had developed—commanded subconsciously by her brain—to cope with her visual distortions. "I know it sounds crazy, but I had no idea I was doing this," Brierley said. Her mother chastised her for having bad posture, but didn't suspect a serious problem. In addition, many doctors at the time incorrectly believed that strabismus could be corrected only in childhood.

So Brierley lived as normally as she could. She finished college, built a career in IT systems integrations and project management, made friends and took up hobbies, including sewing and rollerblading. But her twisted postures caused chronic, often severe pain in her neck, back, shoulders and hip, due to the repeated strain on her musculoskeletal system.

 "All her life she held her head in this funny posture, so you can imagine how that would affect the muscles of your neck and spine," said Hong Yu, MD, clinical assistant professor of neurosurgery. "There was a lot of stress and strain on her musculoskeletal system from holding her head crooked for so many years."

"I had screaming, unrelenting pain for over 20 years —sometimes it felt like the side of my face was on fire," Brierley said. "I used to bargain with God, saying please, just take this pain away." To escape the pain, she would curl up on her living-room sofa for hours, laying on her left side. Though she enjoyed her work at Bay Area software companies, sitting at a computer made her pain worse, and in 2001 she had to stop working and go on disability.

Seeking relief, Brierley bounced from one specialist to another, including ophthalmologists, neurosurgeons and orthopaedists. She underwent treatments including cervical spinal fusion surgery, radial tunnel surgery and posture training. But her relief was temporary; the pain always returned.

Brierley began to suspect that her lack of progress was due to uncoordinated care by doctors who were treating her symptoms in isolation but not addressing the bigger picture: the connection between her untreated strabismus and her painful upper-body postures.

"I kept falling between the gaps," Brierley said. "I couldn't get anybody to really listen to me and incorporate my vision problems into my treatment."

So Brierley last year sought to consolidate her care at Stanford. In January 2009, she got a referral to Stanford's Eye Institute, and in March she had a consultation with Douglas Fredrick, MD, clinical professor of ophthalmology and pediatrics, who specializes in pediatric ophthalmology and strabismus.

After hearing from Brierley about her medical history and prior treatments, Fredrick clearly saw her frustration. "She felt that other doctors didn't understand what she was asking for," he said. "I think she recognized that here she'd found someone who understood what she was going through."

Based on his examination, Fredrick told Brierley she was a good candidate for surgical correction of strabismus. He explained that the procedure could nearly eliminate her double vision, but wouldn't restore her vision completely. "I told her we can't remove her burden entirely, but we can lighten the load. I wanted to make sure she had realistic expectations," he said.

Brierley was eager to have the surgery. But before Fredrick will correct a patient's strabismus surgically, he tries a temporary fix: custom-made prism glasses that bend light waves so they enter the eye differently. By simulating how the world would appear after surgery, Fredrick could thereby gauge the likely success of surgery.

In Brierley's case, the prism glasses did the trick: They eliminated her double vision and her need for the compensatory postures.

"When I put on those glasses, I straightened up immediately. It was remarkable," she said. For Brierley, seeing normally for the first time in 30 years was a revelation. "I'd had an intellectual understanding of what my problem was, but I didn't really understand the full impact until I put on those glasses." What's more, after Brierley put on the prism glasses, her neck pain was gone. "It was like a switch had been turned off."

With the prism glasses, Brierley's functioning and self-confidence surged. She marveled at being able to walk normally and hold her head straight without pain. That New Year's Eve, she attended at a party at her church, and she danced unselfconsciously and comfortably for the first time.

While waiting to have her eye surgery scheduled, she was referred to Stanford Neuroscience to have her spine evaluated for possible degeneration. Having endured previously unsuccessful spine and elbow surgeries, Brierley was wary of consulting another neurosurgeon. This time, she was determined to find one who would consider her entire medical history and coordinate any treatment with the rest of her care.

So in October Brierley called Stanford Hospital’s Guest Services, explained her situation and sought guidance on finding an appropriate neurosurgeon. She was referred to Alison Kerr, RN, an 18-year veteran of Stanford Hospital & Clinics, who was then the nurse manager for neurosciences.

That contact turned out to be a godsend, said Brierley, who calls Kerr "my medical guardian angel." During a series of phone conversations, Kerr talked with Brierley about her medical history and her desire for comprehensive, coordinated care.

"I got a strong sense she was determined to be well, to be productive and get back to work. That’s what most impressed me about her," said Kerr, now director of business development for neurosciences.

Kerr scheduled Brierley in November to see Yu,  a relative newcomer to the Stanford faculty. To Brierley's relief, Yu’s evaluation found that despite some damage to her spine, she would not need further surgery, and her spine would stabilize as her visual distortion, and the compensatory postures, were corrected.

Kerr also recommended a physical therapist she knew at the Stanford Medicine Outpatient Center in Redwood City, whose combination of toughness and caring would fit well with Brierley's personality, she felt.

Brierley did physical therapy twice a week for 11 weeks, and she never missed an appointment, despite the long trips from Sacramento. She subsequently had shoulder surgery to repair a torn rotator cuff —another injury related to her compensatory postures.

In May, the last piece of Brierley's treatment puzzle fell into place, when she had strabismus correction surgery on her left eye. The outpatient procedure involves adjusting two of the six muscles that control the eye's movement, in order to correct the misalignment.
 
The eye muscles, Fredrick explained, are like straps attached to the eye, and the surgery for strabismus "is like pulling the strings on a marionette."

"It's a challenging procedure," said Fredrick, who does about 150 such surgeries annually, and is one of just a handful of Bay Area eye surgeons to perform it. "There are a lot of subtle steps to follow, and it's done manually, using some surgical equipment but mostly requiring meticulous dissection and careful surgical planning."

When Brierley's eye patch was removed the following morning, she was nervous, wondering whether her visual distortion would really be gone. To her relief, it was.

"The improvement in my quality of life is off the charts," she said.

Brierley has taken up new hobbies and projects. She started writing children's stories, got back to rollerblading and restarted an effort to grow her own business, selling plant-based skin-care products.

She is using her experience to help other children with strabismus, by raising awareness of the condition and the misconceptions that led to her inadequate treatment. Volunteering for the Stanford Eye Clinic, she speaks to parents of children with visual disturbance and ocular misalignment, helping them understand how their children see the world, and reassuring them that corrective treatment is available.

She credits her Stanford healthcare team not just for their medical expertise, but their willingness to listen to her — and each other. "The collaborative effort is what really stood out about my care at Stanford. Instead of looking at just their piece of my treatment, they were talking to each other and looking at my entire care."

by Sara Selis.