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CNI: A Timeline of Accomplishments

Flight of the Butterfly

by Gary VanderArk, MD
Past President, CNI

During the conception stage of the Colorado Neurological Institute (CNI), in the late 1980's, a few expert neuroscientists were discussing the secret to providing leadership in the neuroscience arena -a task as difficult as getting butterflies to fly in formation.

As a result of that meeting, the butterfly has since been the symbol of CNI, which was founded in 1988. CNI now is the largest, most comprehensive neuroscience center in the Rocky Mountain region. Over the course of 24 successful years of treating patients with neurological diseases, this butterfly has gone through several metamorphoses.

Think Back

But first, think back to 1969. Apollo 11, the first manned journey to the moon lifted off from Florida's Kennedy Space Center, Easy Rider and Butch Cassidy and the Sundance Kid rolled across movie screens. A farm in upstate New York became an instant gathering of 500,000 music-lovers at the Woodstock Art and Music Festival.

And two pioneering physiatrists envisioned a Denver-based hospital that would focus on central nervous system rehabilitation. After the doctors asked all of the city's acute-care hospitals for available land, Swedish Medical Center responded. In 1970, an 80-bed rehabilitation hospital, Craig Hospital, was built behind Swedish.

The creation of Craig Hospital paved the way for many neurosurgeons and neurologists to establish their practices in the Mile High City and, eventually, for the birth of CNI. Swedish Medical Center, because of this landmark event, became the state's and the region's neurological hub. Craig Hospital, meanwhile, now is a world-renowned hospital that is exclusively dedicated to the specialty rehabilitation and research for patients with spinal cord injuries and traumatic brain injuries.

Staying true to its mission

When CNI opened its doors in 1988, the experimental airplane Voyager completed the first nonstop, round-the-world flight without refueling, Mario Andretti recorded the fastest-ever Indianapolis 500 lap at more than 221 mph, and Jimmy Swaggart followed the lead of fellow Tele-evangelist Jimmy Bakker and was caught up in moral scandal.

CNI's original mission parallels its mission today -to serve people with neurological disease. To accomplish this objective, it organized programs for each type of disease. Each program offers a multi-disciplinary approach by conducting research, providing education and measuring outcomes data to prove that patients are getting the most cost-effective and highest quality care available.

Its first year of service increased inpatient revenue at Swedish Medical Center by 31.7 percent. In almost 14 years, CNI has expanded from three programs, multiple sclerosis, stroke, and spinal conditions, to seven programs and eight services. It now houses the National Center of Excellence for treating both Parkinson's disease and Huntington's disease. Its 80 neuroscientists also treat epilepsy, brain tumors, Lou Gehrig's disease, sleep disorders, migraines, neuromuscular disorders, all head and spine injuries, and many more illnesses.

Transformation, then reorganization

The latest metamorphosis occurred in 1995, when CNI reorganized and became a community not-for-profit organization with a new board of leaders.

But whereas CNI is dedicated to its patients' neurological health, this transformation bred a rebirthing of its own organizational well being. Cindy Acree was elected chairman in 1999, thus making CNI the country's only neurological institute to be led by a former patient.

Stories from Our Patients

• Brain Tumors
• Cochlear Implants
• Dystonia
• Epilepsy
• Migraines
• Parkinson's Disease
• Stroke

Brain Tumors

Four months after being diagnosed with a low-grade astrocytoma, computer programmer Scott Vickroy found the CNI Center for Brain and Spinal Tumors. For the first time since his diagnosis, he felt hopeful about his outcome.

Scott had already undergone surgery followed by standard radiation. Instead of reducing the size of the brain tumor, he was shaken to learn it had doubled in size, suggesting that his tumor was highly aggressive. His doctors said another surgery was too risky and recommended using standard chemotherapy. Scott felt like he was just given a two year death sentence.

Team Approach

In February 1999, Scott's wife, Shelly, happened to meet another brain tumor patient who described the team approach at CNI's newly established brain tumor program. Scott and Shelly decided to get a second opinion.

The programs' co-medical director, Dr. Edward Arenson, presented Scott with medical options he was not aware of. The CNI team gave him hope for more than just the standard treatment that might prolong his life - they actually gave him hope for a cure. "I cannot tell you how important that hope was to my outcome," Scott says.

The Vickroys decided to put their trust in CNI. It was important to stay home in Denver, and CNI's aggressive treatment plan included a cutting-edge clinical trial using photodynamic therapy (PDT). The program also offered Scott the emotional support he needed to stay positive.

Surgery

In March 1999, Scott underwent his second surgery - an awake craniotomy using functional imaging, frameless stereotaxy, and photodynamic therapy. Scott was awake during the surgery, and actually assisted the doctors in mapping his critical brain functions, ensuring that his speech, vision, motor skills, and cognitive function would remain intact. Neurosurgeon Dr. Timothy Fullagar, accomplished a 99 percent tumor resection with minimal loss of function, much better than the 75 to 80 percent outcome Scott had expected.

Over the next four months, Scott underwent four rounds of chemotherapy, followed by high-dose chemotherapy and a stem cell rescue. Since then, follow-up MRI's have been very promising, showing no active tumor.

Looking back, Scott believes that the team approach to CNI was the key. "The experience of the doctors, their willingness to use every available type of therapy, and their aggressive approach to fighting cancer are the reasons I'm still here."

A New Lease on Life

Three years after his original diagnosis, Scott, Shelly, and their seven year old son, moved from Denver to the small town of Palisade, CO, to start over by running a small family orchard with Shelly's parents. In October 2001, they completed their first harvest of cherries, peaches, apples, and other Colorado fruit. Working in the orchard has helped improve Scott's balance, strength, and stamina. "There is nothing like the produce you pick with your own hands," Scott says. "And nothing like getting a new lease on life."

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Epilepsy

Cindy Acree is an inspiration to everyone connected with CNI -doctors, nurses, patients, staff, and volunteers. She went from being a CNI patient to becoming the chairman of the board of the Colorado Neurological Institute. In 1999, CNI established the Cindy Acree Hope Award, given annually to patients who inspire others with their courage and strength.

Cindy's mother, Midge Garza, wrote the following letter, and also nominated her daughter for a national award given to four women who overcame adversity to make a significant contribution to their community. Cindy accepted the award in New York in December 2000, on the ABC television program The View.

Flowers in Her Heart
By Midge Garza

For 14 years, Cindy battled adult-onset epilepsy. Even the strong medication she took could not control the seizures. Instead, the side effects from the drugs left her weak, unable to concentrate, and with hand tremors. She could not drive or even shower without having someone nearby in case she had a seizure. Having children was not in the picture. Despite these obstacles, Cindy managed to complete college and law school, and to begin her career as an attorney.

By the time she was 34, after discouraging visits to some of America's best hospitals, Cindy decided that brain surgery was her only hope of curing her seizures.

During a difficult six hour surgery, doctors at the Colorado Neurological Institute (CNI) removed two inches of brain tissue. On the operating table she suffered a stroke, paralyzing her left side. Her doctors were devastated, but Cindy comforted them. I admired her nobility, but seeing her bandaged head and useless limbs was heartbreaking.

One month later Cindy returned to work, without the use of her left arm and using a leg brace and cane for assistance. Her progress was remarkable. Seizure free and off medication, she was soon driving again. The next year, her first child was born. Cindy named her daughter Hope. Three years later, Hope was delighted to be the sister of twin brothers, Alec and Austin.

Never one to shrink from a challenge, in 1998 Cindy rode in her first 100-mile bike race at the age of 42. She continued to train hard, and in 1999 she amazed us all by completing the grueling 437-mile Colorado mountain bike raced called Ride the Rockies.

At work, Cindy manages the trademark portfolio of a well-known department store chain. She is active in her church and philanthropic sorority, promotes rehabilitative driving programs to help the disabled achieve independence, and serves as chairman of the board of the CNI. CNI even named their annual award for courage in the face of adversity the Cindy Acree Hope Award.

Five year old Austin says his mother has flowers in her heart. The wonderful thing is, she shares them with the world.

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Epilepsy

Two-day-old Emma Short, born three months prematurely, suffered a stroke. When she was 10 years old, the ensuing scar tissue on her brain began causing epileptic seizures. During the next 17 years, Emma's seizures became more frequent and more severe, as often as three times a day.

Regardless of her seizures, she rarely missed a day of private school, because she loved to learn. Her family became protective of Emma by monitoring all of her daily activities, such as crossing the street and taking her medications. There were no trips to the shopping mall with girl friends or dating. Leading any kind of normal life was virtually impossible.

Her Grand Junction neurologist, feeling hopeless, referred her to the CNI Epilepsy Center. When Dr. Ronald Kramer first met Emma, he felt she might be a candidate for a hemispherectomy, an operation in which half of the brain is removed in an effort to cure the seizures. Side effects can include weakness and reduced agility of the remaining hemisphere, which is able to take over the functioning of the whole brain.

Testing

Emma underwent a series of intensive tests and was admitted to the CNI Epilepsy Center's Monitoring Unit at Swedish Medical Center in September 1998. Video monitoring determines the seizure's focus by placing electrodes on the scalp. Later, Emma underwent Wada testing, which involves anaesthetizing each brain hemisphere to ascertain speech and memory dominance. Finally, Emma underwent a complete neuropsychological battery of tests to determine the level of cognitive functioning, including memory, verbal and nonverbal skills.

In the meantime, physicians at the CNI Epilepsy Center discussed, educated, and prepared Emma and her family for the possible postoperative outcomes. The goal was to cure Emma's epilepsy, however, she also needed to know that her deficits might worsen. When the physicians completed her work-up, including testing, consultation, and education, they determined Emma was indeed a candidate for the surgery.

Although dramatic and risky, hemispherectomies have a 90 percent success rate in slowing or curing seizures. Emma and her family decided the surgery was worth the risk.

Emma's Surgery

In March 1999, 20-year-old Emma underwent an 8-hour surgery. The CNI team, led by neurosurgeon Timothy Fullagar, MD, removed the diseased part of Emma's brain, disconnected the rest of the hemisphere, and left intact the motor function on the opposite side of her brain.

"The changes I see in Emma are that she has become more assertive and she has taken control of her medical care," says Peggy Hugger, RN, patient care coordinator for the CNI Epilepsy Center.

Emma was shy and terrified of public speaking when she won her Hope Award. However, a year later, at another awards ceremony, Emma was eager to introduce herself and tell her story. What a difference a year makes, Hugger says.

Emma explains that the technology and the team's expertise were the most valuable parts of her experience at CNI. "You guys really understand," she says about the CNI team of physicians, nurses, and neuropsychologists. "You are dedicated to your patients and you have your heart in it. You have so many physicians that know so much about epilepsy."

Today, Emma is seizure free, works, has moved away from home, and has a new life. "And I deserve it," she adds. She would like to travel, "but I've accomplished so much now, that I'm happy." She recommends others seek out the CNI team. "If someone needs help, you guys are there with open arms. You give hope."

Stroke

Stroke is an impairment generally associated with older men, not with 24 year old women -which is why Melanie Edwards never imagined having a stroke when she headed down to southern Colorado for a weekend camping trip with her family.

In June 2001, Melanie, a 10-month newlywed at the time, experienced a daylong headache that felt like a migraine. She managed to drive to a state park near Trinidad to join her husband and parents, but when she awoke the next morning, she could barely chew her food.

"I tried to stand, but my legs didn't work," Melanie remembers. Her husband caught her before she fell and carried her to their camper. About 24 hours after the headache started, Melanie was lying in a hospital.

After being transferred to another medical facility in Pueblo, Melanie spent the next week in intensive care undergoing testing and treatment. "It was freaky," she says, struggling to describe the situation. From Pueblo, she was transported to the stroke rehab unit at Swedish Medical Center.

Rehabilitation

When she arrived at Swedish, Melanie was experiencing significant weakness on her left side, her left arm and leg barely worked, and the left side of her face drooped. She began a two month ordeal of intensive rehabilitation therapy under the care of Dr. Elena Draznin and the CNI Stroke Program.

The difficult and frustrating rehabilitation intensified, because her weak leg connected to the knee she had injured when dancing in high school. Melanie spent a lot of time in denial, still not believing this was happening to her. She is extremely grateful to her therapists, especially Katie Eiler and Nancy Chang, to whom she became close. "My therapists were awesome!"

Most stroke survivors know that the damage caused by the impairment, as well as the nature and time of recovery, is largely determined by how soon they get to a hospital once the symptoms first begin. Looking back, Melanie recalls noticing some of the classic warning signs for two months before the stroke. Not surprisingly though, she ignored them, believing that a stroke wouldn't attack a healthy 24 year old woman.

Stroke survivors know firsthand that the illness takes its toll on the caregivers. Melanie and her husband were no different. The stroke put a severe strain on the newlywed's relationship. Caring for his wife was stressful enough, but her husband now had to worry about completing household chores and paying the bills, matters that Melanie previously handled. Their frustration often turned into resentment and anger.

"It was rough for both of us," she says, "but we made it through. Since our marriage survived this, we decided we could last forever."

Moving On

Melanie is back to work now at her parents' document imaging company. In a twist of fate, Dr. Draznin was a past client of the family business, formerly a medical billing service. She continues to wear a leg brace and has weakness in her arm. Since her insurance coverage expired after three months, she rehabs at home and seeks additional coverage through her husband's insurance policy.

Sometimes, Melanie envisions arriving at the hospital sooner, if only she had heeded the warning signs of a stroke," she says. "I was angry for a while. I felt really sorry for myself. Now, I just want to get on with my life." The stroke pushed Melanie to her limits, but she does see a bright side. "Now I know I can handle anything. I survived a stroke."

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Dystonia

Anne Lofgren Seely enjoyed an active life. She golfed, skied, ran on her mini trampoline, played racquetball and tennis. In 1991, Anne survived a car accident, but suffered a mild whiplash injury. She tried to ignore the weeks of soreness and ache in her neck.

One evening while watching television, she noticed her head turning involuntarily. Thinking it was related to her vision, Anne visited an ophthalmologist who changed the prescription for her glasses. When the head turning increased she returned to the ophthalmologist, who explained the head turning was simply a bad habit.

Later, Anne read an article about a man who had an unusual movement disorder called Dystonia. Surprisingly, they shared similar symptoms. She announced her self-diagnosis to her internist, but unaware of dystonia, he told Anne to meditate to discover the reason for her head turn.

After mediating incessantly, Anne says, "Not surprisingly, no revelations were forthcoming." Anne's internist finally conceded to consult with a neurologist, who immediately diagnosed cervical dystonia. The correct diagnosis took 2 1/2 years, but her treatment adventure had just begun.

Anne cringed when told that the prescription drug Botox¨ was the only truly effective treatment for dystonia. "I couldn't fathom having the deadliest poison in the world injected into my neck muscles," she recalls.

Anne spent $20,000 in search of a "kinder and gentler" treatment and tried massage therapies, chiropractic neck traction, cranial sacral therapy, physical therapy, myofascial release, biofeedback, acupuncture, yoga, and other treatments. For a year, she swallowed 85 nutritional supplements daily, but to no avail -the dystonia worsened.

Eventually, she saw Christopher O'Brien, MD, at the CNI Movement Disorder Center. He introduced her to the Dystonia Medical Research Foundation (DMRF) and the National Spasmodic Torticollis Association. Although Ann used the organizations and Dr. O'Brien's care to learn about her condition and meet helpful people, she continued to refuse to use Botox¨ and didn't join a local support group.

In autumn 1997, her dystonia had worsened to the point of debilitating chronic pain in the neck and shoulder, including the constant pulling down of her head to her right shoulder. Anne could only tolerate three positions: lying, sitting in a high-back chair, or standing with her head against a wall. Such simple tasks as eating, drinking, and caring for her personal needs were an ordeal. "I went to great lengths to be considered normal and to hide the fact that I had a neurological disorder. This sham only lasted so long before I had to confess to having dystonia. What a relief that brought!" Anne says.

At her lowest point in late 1997, Anne attended a symposium in Denver where she met members of the support group she was now determined to join. At her first meeting, group members assured her of their excellent results from taking Botox¨. Although hesitant, Anne tried Botox¨. "The pain disappeared almost immediately and the pulling has been substantially reduced. My level of functioning and quality of life have increased dramatically." When Anne's symptoms worsened, migrating to her jaws, tongue, and face, she received injections in the masseter muscles and around the mouth. These symptoms have also improved.

Although she is not as physically active as before, Anne skis and runs on her mini trampoline. She now sees movement disorders specialist, Dr. Lauren Seeberger at CNI every 12 weeks, where she receives injections in six to eight different muscles. Dr. Seeberger is one of the most experienced Botox¨ injectors in the region.

Anne offers advice to others, "Educate yourself about dystonia in general and your type in particular. I am a staunch believer in empowering oneself with as much knowledge as possible."

Cochlear Implants

The Galoobs seem like the typical all-American family -two parents, three kids, two golden retrievers, and a beautiful home in suburban Denver. All of them, however, have a significant hearing loss and three of them have received cochlear implants from David Kelsall, MD, and his team at the CNI Center for Hearing.

Bruce and Barbara Galoob were born deaf. Each child, Allison, Amy, and Austin, has a varying degree of hearing loss. Barbara, Allison and Amy have experienced a remarkable transition to the hearing world, responding with enthusiasm and delight to the new sounds that surround them.

Barbara began learning about cochlear implants in 1986. She was intrigued by their possibilities, but decided to wait until after she had a family. Before long, she was busy with the responsibilities of raising three hearing-impaired children, so she put on hold any thoughts of getting an implant.

Amy & Allison

The Galoobs second daughter, Amy, was born with a profound hearing loss. By six weeks old, she wore hearing aids. By age three, even with a powerful Israeli-made device, she made no progress.

"We knew she needed more help," Barbara says.

Doctors recommended an implant, so Bruce and

Barbara visited cochlear implanted children and their parents to learn about the positive and negative aspects of the surgery. In December 1996, when Amy was five, they decided she was ready.

Young children have an easier time learning new skills than adults do. In just a few weeks, Amy was beginning to process language, and hearing consonant sounds.

She was alert to every new sound, asking, "Where is that coming from?" Now, she listens well, processes information without lip-reading, and is comfortable hearing sounds through her implant.

Allison got her implant in 1999 at age 11. "My speech therapist told me I would hear better with it," Allison says. "I thought about it and talked to some older friends who loved it." She wanted to improve her speaking and listen to music, so she decided to go for it.

The difference between an implant and a hearing aid amazed Allison. The first sound she heard - her mother's voice - sounded high pitched and loud, and Allison worried that she may have made a mistake.

But her grandfather's voice sounded deeper and more soothing, and she quickly learned how to process and distinguish all the new sounds.

Two years later, she can identify people's accents in a restaurant or store and often times strikes up a conversation with them. She loves to listen to music on her CD player and easily learns new words.

Barbara, Bruce & Austin

When Barbara's children were older, she had cochlear-implant surgery. She expected the sound to be similar to her hearing aids, but every noise sounded completely different. She was hearing beeps, not voices, and could not differentiate between high and low frequencies. Everything sounded identical -voices, the dogs' barks, and environmental noises, such as a knock at the door or the telephone ringing.

In two months, Barbara retrained her brain to understand what she was hearing. The experience was both exciting and frustrating. She finally could hear the consonant sounds, S, SH, K, T, CH, and D. Now, Barbara can understand song lyrics. She loves hearing her son singing in the car and enjoys classical music. When she hears new sounds, she asks what it is so she can recognize it the next time. "It's a miracle, I love it!" she says.

Barbara's husband Bruce, who has worn hearing aids since age three, has strongly supported his wife and daughters' decisions to get an implant. He also is considering and evaluating a cochlear implant.

Seven-year-old Austin wears binaural hearing aids for his mid-moderate hearing loss. He sings and talks on the telephone, but is an unlikely candidate for a cochlear implant.

Barbara tells others who are considering an implant that "it's important to feel good and confident about your decision. Talk to people who have them." Allison is more direct, "If you are thinking about a cochlear implant," she says, "Go for it!"

Migraines

Now 66 and retired, Phil Karsh grew up in Salt Lake City. His mother had migraines and he began experiencing headaches as a young boy around eight years old. He does not know if the pressures of school may have contributed to his headaches, but he does remember using the pain as a good excuse to stay home from school.

For most of his adult life, Phil was determined to fight through the problem, learning how to manage the pain at work or in social settings. He married, raised a family, and enjoyed a successful career. Around 15 years ago, his headaches became more frequent and severe, He decided it was time to do something about It.

The Long Road

Phil began a long and frustrating series of appointments with a plethora of doctors, psychologists, and neurologists. They put him through every test imaginable and prescribed a variety of medications. Most would work for a while, but they eventually became ineffective. Finally, a doctor who was treating him for Crohn's disease referred him to a psychiatrist.

The psychiatrist prescribed new medications, and even got him into a clinical trial testing a new drug. But as far as Phil was concerned, the best thing the psychiatrist did was refer him to Dr. Judy Lane at the Colorado Neurological Institute.

It took time and a lot of patience, but Dr. Lane found the right combination of medications. He is currently taking two pills a day, down from a high of seven. Phil's last serious headache was on January 11, 1999. He remembers it vividly because it happened while he was on vacation with his wife. The migraine was so bad that he ended up in the hospital.

"I think Judy Lane hung the moon," Phil says matter-of-factly. "After a lifetime of migraines, she really helped me. If anybody tells me they have migraines, I give them Judy's card."

Phil belongs to the National Headache Foundation, an organization that he finds to be a wonderful resource for information. He believes firmly that people should learn as much as they can and be as educated as possible about their own illness. He encourages anyone suffering from an illness to find the doctor with the most experience in treating their illness. Most of all, don't give up.

Parkinson's Disease

Although Greg Hatstat once aspired to be a pilot, Parkinson's disease robbed him of his dreams, but not his spirit. "This disease will take over your life if you let it." says Greg. "You need to have a sense of humor."

Greg married in 1989. A year later, he was diagnosed with early onset Parkinson's disease. He was an aerospace engineer, a high-stress job that aggravated his symptoms, until he was forced to quit in 1993. He found his way to CNI in 1998, when Dr. Rajeev Kumar had begun research on a promising new surgical therapy called sub-thalamic nucleus deep-brain stimulation.

For the next two years, Greg and Dr. Kumar tried a series of medications. Eventually, he was up to 40 pills a day. The side effects made him foggy and unfocused, but without them his symptoms were so severe that he became immobile. "My wife is a real saint, I was completely dependent upon her," he says.

Quality of life decision

In February 2000, Greg decided to try deep-brain stimulation. "My quality of life had diminished to the point that it was the only alternative," he says. "I had confidence in Dr. Kumar. I knew he would take good care of me."

Greg was awake during the 12-hour brain surgery. The engineer in him was fascinated by the technology and the interaction in the operating room. "Dr. Kumar and Dr. McVicker were like a well-oiled machine, they are an awesome team!"

Recovery was an emotional experience for Greg. He regained his independence, started driving again, cut down his medications to a few pills a day, and became more stable and less foggy. He shared with other patients the joys of going on his first bike ride with his children and going ice skating for the first time in years.

Now, Greg reports the underlying disease is progressing, although, he says, "The stimulators are keeping things in check, but the number of medications are increasing too." Although the disease is progressing, Greg describes his decision to go through with the surgery as "definitely a check in the plus column. I would do it again without hesitation. It was a quality-of-life decision... and I gained that. I always said that if I only get six months of relief, the physicians have done their job, and it has been more than that."

Since his surgery, Greg has been volunteering his time with Dr. Kumar on a variety of Web-based projects, including the creation of a multimedia presentation about deep brain stimulation. To find out more about this presentation please look on the CNI Movement Disorders Web site at www.TheCNI.org/movementdisorders.

Regardless of the progression of the disease, Greg has given inspiration, hope, and courage to other patients of deep brain stimulation and their families. "I feel some-what responsible for their outcomes. That is why I sit with their families in the waiting room. That is why we check up on each other -- we share things in common." He also tells other patients diagnosed with Parkinson's Disease to be realistic, this is not a cure. It's an alternative treatment.

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