Editor’s Note: Jenny is the mother of two children with special healthcare needs and a Patient & Family Advisor at her local children’s hospital. In addition to her lived experience, Jenny calls upon her professional experience as a social worker to help her write blogs from her home in Wisconsin. – Cara L. Coleman, JD, MPH, Associate Editor, Pediatrics
Family Connections with Pediatrics
My daughter started third grade this year. Instead of crayons and glue sticks, her school supply list now included things like highlighters and packs of sticky notes. As I stood in the crowded shopping center, my mind drifted back to the day we first met the neurosurgeon at our local children’s hospital. She always seemed to have a pack of sticky notes in her pocket.
“We will do one more MRI to confirm,” she said, “but it looks like your daughter has something called tethered spinal cord syndrome.” She scribbled a few words on a bright pink square of paper and then said, “Here, you can go home and google this. Start doing some of your own research and our team will be in touch soon to schedule the surgery and answer any questions you have.”
And just like that, I became a TCS Mama, the name we gave ourselves in the online group I promptly joined that night. There is not one clear path forward when it comes to tethered cord, and no shortage of information to wade through, either. This month’s Pediatrics highlights this abundance of research in an article entitled “Diagnosis and Treatment of Tethered Spinal Cord: A Systematic Review” (10.1542/peds.2024-068270).
What is tethered spinal cord syndrome?
Tethered spinal cord syndrome is a disorder in which the spinal cord attaches to the spinal canal, causing too much stretching and tension in the cord. This can lead to pain, motor impairments, sensory issues, and trouble with bladder and bowel function. Not all children have symptoms at first, but if not managed properly, a tethered cord can lead to irreversible nerve damage and permanent dysfunction.
Often a tethered cord is first suspected due to an external marker on the lower back. This could be a tuft of hair, a fatty lump, a small indentation, or, as was the case with my daughter, a patch of blood vessels called a hemangioma. A diagnosis is then made through clinical evaluations, nerve function tests, and images like ultrasounds and MRIs.
What is a systematic review?
A systematic review is a type of research that tries to collect all the different studies and evidence about a certain topic. This information is then summarized and analyzed so that researchers can make conclusions about that topic. Systematic reviews are an important research technique because they help inform the difficult decisions made by families and healthcare providers. For this systematic review, authors looked at 13 different databases and 450 studies resulting in 6,285 citations related to tethered spinal cord. They also contacted the original authors to ask for any other relevant information.
What were the main features of the article?
This review looked at four main aspects of the research:
- Diagnosis of tethered cord
- Treatment if a patient is already showing symptoms
- Surgery before symptoms arise to prevent future damage
- The possibility of the spine becoming tethered again
The authors also asked 4 key questions of the research:
- How accurate were the images and criteria used to diagnose tethered cord?
- How effective is surgery for patients who are already experiencing symptoms?
- What are the benefits and harms of surgery for patients who are not showing symptoms?
- If a person retethers, what are the risks, rewards, and long-term outcomes of repeating surgery?
What can you do with this article?
- Share this article with your healthcare team. If your child already sees a neurosurgeon or urologist, use this article to help inform the conversation. Do not be afraid to ask questions!
- Share this article with your family and friends. This is probably scary for them as well, but it can be exhausting to answer all their questions and hold space for their worry and confusion too.
- Advocate for research that also looks at the psychological and social impact of tethered spinal cord. Topics like trauma-informed care and counseling for families were absent in this review.
It has been almost 9 years since we walked out of that exam room with our crying infant and our bright pink sticky note. Despite the scars, both physical and emotional, I am proud to be a TCS Mama.
