Physician-Scientist Raises Awareness of Commonly Misdiagnosed Neuropathy Linked to Lower Back Pain

A physician-scientist at Cincinnati Children’s is raising awareness of a type of neuropathy that’s likely misdiagnosed—and mistreated—in numerous patients with lower back pain. Pediatric spine surgeon Alvin Jones, MD, MS, first diagnosed a patient with superior cluneal nerve entrapment syndrome (SCNES) in 2017.

Since then, Jones’ efforts to better understand and treat this condition have produced meaningful results. He has helped dozens of adolescents and young adults overcome the disabling pain associated with SCNES. And through research, he’s validating the clinical signs and operative criteria other providers may need to diagnose and treat their own patients.

Understanding Superior Cluneal Nerve Anatomy

The superior cluneal nerves are purely sensory nerves that innervate the lumbar area and buttocks. They originate from the T12 to the L5 nerve roots and travel toward the iliac crest, piercing the thoracolumbar fascia about 7 centimeters lateral to the middle of the lower back. Some of their branches pass through an osteofibrous tunnel formed by the thoracolumbar fascia and the iliac crest.

Studies suggest the superior cluneal nerves are susceptible to entrapment, especially within the osteofibrous tunnel. This usually affects the nerves that come from L1 to L3, leading to lower back pain that can radiate down the posterior lateral hip and thigh.

“Like many other spine surgeons, I wasn’t taught to look for this type of nerve compression when evaluating lower back pain,” Jones says. “Because it causes symptoms that mimic more familiar conditions like disc herniation and spondylolysis, superior cluneal nerve entrapment syndrome is easy to misdiagnose—especially if you don’t know what you’re looking for.”

Just six years ago, Jones wouldn’t have considered the possibility of SCNES as a cause of low back pain. But then he met a patient whose symptoms didn’t match up with most diagnostic criteria.

A Quest to Provide Answers—and Relief

The patient who sparked Jones’ interest in SCNES was a 15-year-old athletic male with right lower back pain. He was unresponsive to over-the-counter medicine, so Jones referred him for physical therapy—which didn’t help.“When he came back three months later with no change in symptoms despite rehabilitation, I ordered a lumbar spine MRI,” Jones says. “The MRI was normal, and previous motor function testing also didn’t find any deficits.”

Since Jones was left with more questions than answers, he turned to the literature.

After a lengthy PubMed search, he found an intriguing journal article that described low back pain caused by entrapment of the superior cluneal nerve near the iliac crest. According to the authors, this condition can be mistaken for a lumbar spine disorder—but if diagnosed correctly, it can be successfully treated by releasing the nerve.

At his patient’s next follow-up appointment, Jones applied what he’d learned.

“I conducted a physical exam that confirmed the patient’s pain likely originated from the superior cluneal nerve; he had exquisitely tender trigger point pain 7 centimeters from the midline over the iliac crest,” he says. “I also gave him a diagnostic trigger point injection, which provided relief for one week. This indicated he would have a positive response to surgery. So, after a thorough conversation with the family, I scheduled him for nerve decompression.”

During the surgery, Jones widened the osteofibrous tunnel, the part where the superior cluneal nerve passes through. When the patient attended his postoperative follow-up appointment two weeks later, he was pain-free.

A Retrospective Review Provides Robust Data

Through his ongoing research, Jones has found publications describing what’s now known as superior cluneal nerve entrapment syndrome dating back nearly 90 years. But these studies were few and far between until the mid-2010s, when Japanese researchers began publishing numerous studies about the relationship between the superior cluneal nerve and low back pain.“

Although there has been a renaissance of this diagnosis in Japan, their research is focused on adults,” Jones says. “I’m applying the evidence, and drawing on my own experience, to treat adolescents.”

Over the next three years, he saw a gradual increase in referrals for teens and young adults with nonspecific lower back pain that didn’t respond to previous treatments. And as Jones has come to expect, some of them met the criteria for SCNES.

In 2020, he received Institutional Review Board approval to retrospectively follow the first 25 patients he’d treated for SCNES. The resulting data, which included patients between the ages of 13 and 23 years, showed:

• Nearly 80 percent were female.
• Among male and female, 75 percent were current or former athletes.
• Nearly 42 percent rated their pain as severe (7 to 10 on the pain scale), and 75 percent reported radiating pain into the hip, thigh or knee.
• Postoperative pain scores were statistically improved, with 88 percent reporting their symptoms were “better” at their latest follow-up visit.

“I’m not sure why this condition seems to skew female, but the association with athletes makes sense,” Jones says. “There is a rapid increase in muscle development during adolescence, which is often enhanced among those who play sports. This increased muscle tone may put extra pressure on the nerve.”

Clinical Signs of Superior Cluneal Nerve Entrapment Syndrome

Today, as Jones continues his research, he’s collecting patient-reported outcomes scored by the Roland Morris Disability Questionnaire. And as part of a prospective study of new patients diagnosed with back pain, he’s gathering data via an anatomical survey that documents the details of their pain.

Jones says so far, cumulative evidence shows providers should use the following criteria when trying to confirm or rule out SCNES:

• The condition occurs post-puberty.
• It causes lateral lower back pain; look for trigger point pain 7 centimeters from the midline, directly over the iliac crest.
• Pain may radiate into the post lateral hip, thigh and buttocks.
• Pain is aggravated by cross-body flexion and/or low back hyperextension.

Patients may qualify for nerve decompression if:

• They have at least three clinical signs.
• They’re nonresponsive to oral medication.
• They had a failed response to physical therapy.
• A trigger point injection provides initial pain relief, with eventual recurrence.

Jones says his efforts during the last five years remind him why he loves being a surgeon: He often has the ability to take away someone’s pain.

“I’ve diagnosed superior cluneal nerve entrapment syndrome in kids who have been living with pain for years,” he says. “They’re coming to me after seeing multiple providers, including pediatricians, chiropractors, acupuncturists and chronic pain specialists. I’ve been able to help restore their quality of life, while making sure they don’t end up having unnecessary spine surgery.”

(Published December 2023)

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