Unlocking the mystery of chronic pain

Hitting a Nerve

Dr. Tim Tollestrup

Chronic pain. Just looking at those two words in print evokes a visceral reaction. Chronic pain is evil and unrelenting. It can take a vibrant, healthy person and render them helpless. It can be a lonely life of isolation and desperation.

Take the story of Tom Stoeser. An uber-active guy who exudes athleticism and vigor, Tom injured himself running in 1992. For 25 years, he has been searching for a solution to his chronic pain.

Stoeser tried everything from traditional treatments to nontraditional to downright bizarre. Some but not all of the remedies he attempted include: physical therapy, rolfing, chiropractors, acupuncture, bursa sac injections, dry needling and polestar Pilates. The pain in his left buttock was so bad he couldn’t sit. Movie night at his house meant an empty seat on the couch next to his wife.

In a girls’ night out gone awry, Tina DiMichele crushed her shoulder wrestling with her girlfriend. She had surgery, but the pain lingered and deepened. DiMichele developed constant, breathtaking pain in her right neck, shoulder and arm. The pain was so intense she couldn’t sleep. Then it started to affect her heart. She wrote her own will because she thought she was going to die.

Veteran Frank Schultz was on the brink of suicide after an IED in Afghanistan shredded his hip. Surgery, physical therapy, pain meds—nothing gave him relief. His pain was so debilitating that he couldn’t play with his kids, leave the house or keep a job. Schultz was down to his last hope.

Stoeser, DiMichele and Schultz are the type of patients Dr. Tim Tollestrup sees on a daily basis. Patients at the end of their rope. Before getting to Dr. Tollestrup, they have already seen, on average, 10 other doctors, endured a wide range of therapies and treatments, written letters to Congress as well as their own wills. They bring with them their detailed histories, frayed nerves and tenuous hope that Dr. Tollestrup can be their savior.

The common thread for all of these patients is that they have suffered damage to peripheral nerves. Patients with chronic pain of peripheral-nerve origin have been through a vicious, never-ending cycle where no one can figure out the problem. Until they meet Dr. Tollestrup, a peripheral nerve surgeon looking at chronic pain through a very different lens.

“In the past, peripheral nerve surgery has been geared toward restoring function,” says Dr. Tollestrup. “No one has focused on the peripheral nerve system as a gateway to treating chronic pain.”

The reason, he says, is twofold.

“Ever since the discovery of opium and narcotic pain meds, that is how pain has been treated,” Dr. Tollestrup says. “In medical school, physicians have no exposure to peripheral nerve anatomy, since all chronic pain is shoved to chronic-pain management with medications. No one looked for these other solutions.”

Dr. Tollestrup is one of a handful of surgeons in the U.S. and around the world who is rewriting the playbook for treating chronic pain. On occasion, he even has to come up with new surgical procedures to address the needs of a specific complex patient or unusual problem.

Tollestrup Procedure

Take Stoeser’s situation. An active outdoorsman from Coeur d’Alene, Idaho, for years he tried to work around his pain. He built a standing desk at work and at home. He resigned from a board back East since he couldn’t sit on a plane.

What kept him sane was his ability to continue his athletic lifestyle. Since sitting increased the pain and movement decreased the pain, he could still ski, run and hike. Until earlier this year, the pain became constant and sports were no longer an option.

“Right before surgery with Dr. Tollestrup, I was at my lowest,” says Stoeser, 62. “The pain management doctor was talking about a spinal cord stimulator. I was having pain all the time. I was taking 12 Advils a day. I started to worry about the effect on my liver.”

Luckily, a colleague mentioned his successful surgery with Dr. Tollestrup. Stoeser didn’t hesitate, and he flew to Las Vegas to meet with him. He paced during the appointment since he couldn’t sit.

“When I met with Dr. Tollestrup, I was ready to go, but he wanted to make sure it was the right thing,” Stoeser says. “He was very thorough and didn’t jump into surgery.”

During the surgery, Dr. Tollestrup removed Stoeser’s piriformis muscle, essentially an extra muscle deep in the gluteus maximus that we don’t need. Removing the piriformis muscle is a relatively new procedure in Dr. Tollestrup’s repertoire. He invented it during a surgery a few years ago, and now other surgeons around the U.S. refer to it as the “Tollestrup Procedure.”

“One of the things I love about what I do is that this is still a relatively new field of surgery,” Dr. Tollestrup says. “There are always new nerve problems to be addressed and new pain problems to solve.”

Stoeser doesn’t miss his piriformis muscle one bit. Three months after surgery, he feels 25 years younger.

“I am skiing all day and working out for an hour on the treadmill,” he says. “Even more amazing is that I am sitting next to my wife on the couch and my dog has an extra lap to crawl on.”

Dr. Tollestrup

Dr. Tollestrup

Heart-Wrenching Pain

In 1999, 320 pounds of female flesh landed squarely on Tina DiMichele’s right shoulder. That moment would define her life for the next 17 years. Pain was her constant, angry companion. Physical therapy made her symptoms worse. Multiple rounds of injections had no effect, and two orthopedic surgeries were unsuccessful. She couldn’t socialize since the vibration from any noise was painful. She was a recluse, not leaving home except to work.

“The lowest point was thinking I was going to die,” she says. “My heart was hurting, so I went to a cardiologist. My heart was enlarged and leaking. I asked him, ‘Could this be from pain?’ He said yes. It was that night that I went home and wrote a little will.”

To add insult to injury, her doctors and friends thought she was nuts. “I was told by a neurologist that I needed an antidepressant,” recalls DiMichele. “My friends thought I never got over my mom’s death! Nobody understood me except Dr. Tollestrup.”

DiMichele found Dr. Tollestrup thanks to a recommendation from Dr. Derek Duke, a prominent local neurosurgeon who understands how unique Dr. Tollestrup’s surgeries are and refers many patients.

“When I met with Dr. Tollestrup, he examined me and asked the right questions,” DiMichele says. “I thought to myself, ‘Finally, I have someone who understands my problem.’”

“The field of peripheral nerve surgery takes you back to the roots of medicine, which is the physical examination,” Dr. Tollestrup says. “You have to do a lot of listening. You can’t grab a textbook. You have to take each case patient by patient because many patients don’t fall neatly into categories.”

DiMichele had two nerve decompression surgeries with Dr. Tollestrup. Her life is now on a different trajectory.

“I am improving every day,” she says. “I can brush my teeth, put on makeup, type and text. I am socializing more on the phone. I am getting there. I am going to designate my new birthday [the date] when I get to the other side of this.”

For this second chance, she is grateful to the man who unburdened her from a life of pain and beyond.

“I know my heart couldn’t take any more pain. If I hadn’t met Dr. Tollestrup I would be dead. He literally saved my life.”

Vet on the Brink

When Frank Schultz met Dr. Tollestrup, he was at rock bottom.

“I had made up my mind I was going to commit suicide if he couldn’t help me,” he says.

The pain in my hip and leg had taken a toll on me mentally and physically. My life was limited to a room. My kids wanted to go to the park, but I couldn’t walk.”

Surgery didn’t help. Neither did physical therapy. Out of desperation, he resorted to pain medications but hated the side effects. And to make matters worse, no one would listen.

“The VA kept treating me like I had arthritis,” he says. “I even contacted Congress to get help, and they told me to change my way of thinking! That’s when I got my own insurance and found Dr. Tollestrup.”

Schultz brought his lengthy pile of medical records to the appointment. He was impressed that Dr. Tollestrup took the time to look through all of them. After reviewing the history and talking to Frank, he understood what the problem was. A week later, Schultz was in surgery.

“I am no longer on medication, I can sleep through the night and I am back to work,” Schultz says. “It is an amazing feeling. Meeting Dr. Tollestrup was a life-changing event.”

For Dr. Tollestrup, changing lives is an awesome responsibility and a humbling experience.

“When a patient says he was suicidal and that I am his last shot,
it’s hard to put into words the gratification you get from that,” he says. “To see Frank now gives me hope that we can save other veterans. In my opinion, the reason suicide rates are so high with military vets is because many injured soldiers are dealing with chronic pain due to unrecognized peripheral nerve injuries. I would like to reach those injured vets.”

New Frontier of Medicine

A British Columbia native, Dr. Tollestrup says the desire to be a surgeon was a calling from a very early age.

“I always had a deep, innate desire to help people,” he says. “I want to be able to look at myself in the mirror and say everything I did today was to help someone have a better quality of life.”

Tollestrup graduated from the University of Utah’s School of Medicine and did his residency training in general and trauma surgery at Saint Louis University Hospital. Then fate intervened. He was recruited for a fellowship at the Dellon Institute for Peripheral Nerve Surgery. Dr. Lee Dellon is considered the pioneer in the field of utilizing peripheral nerve surgery as a way to treat chronic pain.

For Dr. Tollestrup, the experience left an indelible mark.

“I did my peripheral nerve surgery fellowship, and it allowed me to see how I can change people’s lives,” he says. “I was hooked.”

Dr. Tollestrup takes great satisfaction in impact of peripheral nerve surgery. He can literally see the difference in his patients’ faces.

“When patients come in, you see the burden of pain that they carry,” he says. “I call it the pain mask. Once you are able to help them, they look like a different person. Their countenance is different because that pain burden has been lifted.”

“I feel bad for anyone suffering from chronic pain,” DiMichele says. “It is a lonely, awful and personal experience. I can’t find a word to express how I feel about Dr. Tollestrup. Grateful is too small of a word for a man who brought me back to life.”

“I tell him I am thankful he took the time to listen,” Schultz says. “If it wasn’t for Dr. Tollestrup, I wouldn’t be here today.”