A Decade of Pain and Medical Dismissal: How Jakki Found Bertolotti Relief

Jakki was just 13 years old when she first experienced debilitating back pain so intense it rendered her unable to move, laugh, or even speak. It would come in waves, reappearing every couple of years, stealing weeks of her young life each time. Despite consulting over ten specialists, including chiropractors, acupuncturists, and physical therapists, her pain remained a mystery. That is, until she took matters into her own hands and discovered a little-known congenital condition: Bertolotti Syndrome.

Jakki’s powerful story was featured in a recent Radio Health Journal interview with Dr. Colin Haines, Spine Surgeon and Director of Research at VSI, the practice that ultimately gave her answers and hope.

Years of Dismissal and Misdiagnosis

What made Jakki’s journey especially harrowing was not just the physical pain. It was the medical gaslighting she endured. Doctors routinely told her the pain was due to minor sports injuries or pregnancy-related strain. “They would look at my scans and tell me nothing was wrong,” she recalled. At one point, Jakki became so frustrated she began taking continuing education classes on spine anatomy, learning to read her own MRI and CT scans.

Her persistence paid off. Through self-study, she identified the signs of Bertolotti Syndrome, a spinal condition involving an abnormal enlargement of the L5 transverse process, which causes bone-on-bone friction against the sacrum. “I saw a pseudoarticulation with sclerosis on each side,” she explained, terminology that pointed directly to her eventual diagnosis.

Learn About Medical Gaslighting on Youtube

Finding the Right Bertolotti Syndrome Expert

After years of dismissal, Jakki finally found a community on Facebook where Bertolotti patients shared their experiences. That’s where she discovered Dr. Haines at the VSI, who was not only familiar with the condition but also respected her research and experiences.

“He believed me,” said Jakki. “He didn’t just dismiss what I had to say. He saw me as a person, not just a chart.”

Dr. Haines explained that Bertolotti Syndrome, though not particularly difficult to diagnose, is often overlooked simply because many physicians are unaware of it or unsure how to manage it. “It’s underdiagnosed because many doctors don’t know what to look for or which tests to run,” he said.

Treatment Options for Bertolotti Syndrome

According to Dr. Haines, treatment for Bertolotti Syndrome depends on the severity of the symptoms. Options typically begin with:

• Physical therapy to strengthen the core and stabilize the spine
• Injections such as corticosteroids
• Regenerative medicine like PRP
• Bertolotti resection or hybrid spine surgery, if conservative methods fail
  

For Jakki, the years of delayed diagnosis led to degeneration of other spinal structures. She eventually underwent two surgeries: an anterior lumbar spinal fusion and an artificial disc replacement, followed by a posterior bone resection to relieve nerve compression.

A New Chapter After Surgery

Nearly a year after her surgeries, Jakki reports an astonishing transformation. “I can survive on an ibuprofen,” she shared. “That’s mind-blowing to me.” She’s now able to play with her children and do everyday tasks that once felt impossible.

While she still has healing to do, Jakki’s quality of life has dramatically improved thanks to her self-advocacy, determination, and finally finding the right physician who truly listened.

Breaking the Silence on Medical Gaslighting

Jakki’s journey also sheds light on a broader issue: medical gaslighting, particularly toward women. Her experience is a cautionary tale and an inspiration for others navigating chronic, unexplained pain. Jakki now advocates for other patients to persist, ask questions, and seek second (or third) opinions when something feels off.

As Dr. Haines emphasized, “There’s a difference between delaying care for a few months versus delaying it for decades. The longer it takes, the more toll it takes on your body and your spirit.”

If you or someone you know is struggling with chronic back pain and searching for answers, contact the spine experts at the VSI to schedule a consultation. You don’t have to live in pain and you deserve to be heard.