Adults with Tethered Cord Syndrome Find Relief Through Surgery

UNC Health Care is one of a few institutions in the world that offers surgery to fix a rare spinal cord condition in adults: tethered cord syndrome. Just over a dozen surgeries a year are completed at the Chapel Hill hospital, and many of the patients having those surgeries traveled hundreds of miles to be there.

To explain this complex surgery and who would benefit from it, we first have to talk about your spine.

An Anatomy Lesson: The Spine

Your spinal cord is a bundle of nerves that runs from your brain down to your lower back. It’s encompassed by the spinal column, which is made up of bones called vertebrae that surround and protect your spinal cord. Cerebrospinal fluid is an added layer of protection that’s found around the brain and spinal cord. The colorless liquid helps your nerves function properly and absorbs shock from an impact. It also allows the spinal cord to move around within the spinal column, giving it room to grow as you grow and move as you move.

Sometimes the spinal cord can become attached, or tethered, to the column, usually at the bottom of your spine. This prevents the spinal cord from properly moving, which can cause pain or more serious symptoms. It’s called tethered cord syndrome.

Identifying Tethered Cord Syndrome

Tethered cord syndrome (TCS) is rare, but no one knows exactly how prevalent it is because it commonly goes undiagnosed. It can affect children and adults, but the causes of TCS differ. In babies and children, TCS is nearly always congenital, meaning the child was born with his or her spinal cord attached to the spinal column or to the skin. In adults, congenital TCS can go undiagnosed for decades until symptoms manifest, or TCS can arise as a complication from previous surgeries that create scar tissue around the spinal cord. In the latter case, scar tissue acts almost like glue, bonding itself to the spinal cord and spinal column and preventing the cord from moving as it should.

There is not a single test that identifies TCS. A patient must show multiple symptoms of a tethered cord, which include back pain, leg weakness, trouble emptying the bladder, growth issues in children, and sometimes a lesion, dimple or hairy patch on the lower back. Several types of physicians typically complete numerous tests before making the diagnosis, including an MRI and a full workup by a urologist (in the case of urinary symptoms) to determine that the patient indeed has a tethered cord.

Fixing Tethered Cords in Children vs. Adults

In children, the surgery to de-tether the spinal cord is more common and can be done at many institutions; the procedure is also lower risk in children than in adults.

“The best age to perform a detethering is 6 months to 1 year old, but it is still very treatable in older children. Infants and children are not fully developed, so their spines are not as complex as adults’, and their bodies are more tolerant of the surgery,” says Carolyn Quinsey, MD, co-founder and director of the UNC Congenital Brain and Spine Malformations Program.

Dr. Quinsey says the detethering procedure involves separating the spinal cord from the tissue of the spinal column, or cutting the spine’s connection to the skin if one has formed. In nearly every case, this surgery permanently alleviates TCS symptoms, so young patients can develop fully and live normal lives.

Most of the adult patients seen at UNC either have gone undiagnosed with TCS since childhood or have scar tissue that developed after surgery to correct a different spine issue. Adults diagnosed with TCS aren’t usually presented with surgery as a first treatment option because it is a more difficult procedure. The fully developed spinal cord and column of an adult are more complex, and scar tissue around the spine may be entangled with nerves.

“Because of the difficulty and increased complication rate of the surgery in adults, most of the time we reserve procedures for patients who have worsened bladder or leg function,” says Deb Bhowmick, MD, section chief of spinal neurosurgery in the department of neurosurgery at UNC Medical Center. “If patients are only experiencing pain, those symptoms can typically be managed by medication. If a patient is not a good fit for surgery, we continue to monitor them for any additional symptoms.”

When Surgery Is the Best Option

Dr. Bhowmick’s team offers two kinds of surgeries to treat TCS in adults. The first procedure is a detethering similar to the surgery performed in children. Complications could include a worsening of leg function, pain or numbness, as well as issues with containing the cerebrospinal fluid near the operation site.

The second option, a spinal shortening surgery, is used to avoid disturbing scar tissue or the location where the spinal cord is tethered. In this procedure, some or all of a vertebra in the spinal column is removed, reducing the strain on the spinal cord and in effect shortening a patient’s height.

“Spinal shortening is not a common operation,” Dr. Bhowmick says. “We remove parts of the spine and reconstruct it using spinal hardware like screws and rods. This procedure can have side effects like infections and bleeding, in addition to the long-term side effects of fusing the spine, which may include pain and limited mobility.”

An International Patient Base

Because TCS in adults isn’t common, only a few institutions in the world offer surgeries to treat it.

“We offer the surgeries at UNC because we saw a need in our adult patients with this problem,” Dr. Bhowmick says. “We have such a robust spinal and urology program that we were equipped to deal with this kind of thing.”

The department receives inquiries about surgery from people across the United States and in different countries. They perform one or two detethering procedures per month and two or three spinal shortenings a year. Dr. Bhowmick says a significant number of those patients have traveled a long way for treatment.

If you are experiencing any of these symptoms, talk to your doctor about a neurological referral. Need a doctor? Find one near you.