FAQ & Guide on Tethered Cord Syndrome (Symptoms, Surgery & Recovery)

(Article has been updated on July 4, 2022)

Tethered Cord Syndrome (TCS) is a blanket term used to describe a set of neurologic symptoms that are caused by the stretching of the spinal cord. Some of these symptoms, which will vary from person-to-person include pain, musculoskeletal abnormalities, incontinence, and more. Children can be born with TCS; however, it can also be acquired during childhood and adulthood too.

TCS is caused by a thickening of the tissue strand connecting the end of the spinal cord to the sacrum. It is usually flexible, but when it is thickened, it becomes inelastic, causing the spinal cord to be unable to move freely. Untreated tethered spinal cord syndrome can cause neurological damage and this condition is more common in children and males than females, but there is a risk for women as well.

In this article, we go into more detail about TCS, including its management and the possibility of living a normal life after diagnosis.

Neurological spine surgeon Dr. Robert Bray gives an excellent explanation about TCS.

What are the Symptoms of Tethered Cord Syndrome in Adults?

The symptoms of tethered cord syndrome in adults are not the same as those of children; they are usually similar to the signs and symptoms of a congenital disability. Adults typically experience leg weakness, painful and infrequent urination, and sensory deficit. Severe symptoms of TCS are often aggravated by spinal flexion. Doctors can diagnose the condition using MRI images, as they can show thickened filum terminale (a strand of fibrous tissue) and other structural malformations^[1].

Dr. Kodlady Orthopedic & Spine Surgeon talks about the symptoms of Tethered Spinal Cord.

The diagnosis of Tethered Cord Syndrome depends on the location of the lesion. Clinical evaluation and MRI studies can assist in identifying tethered cord syndrome. However, doctors need to diagnose patients with TCS properly. These tests involve special imaging techniques and taking a detailed history. The patient will also be evaluated for any signs and symptoms of tethered cord syndrome ^[2-3].

In adults, this disorder may present with:

• Skin lesions are present in almost 50% of adults with this spinal abnormality, for example, hairy patches, dimples, or fatty tumors on the lower back
• Unbearable pain in the lower back with radiation into the legs, groin, and perineum.
• Weakness of muscle and loss of sensations of touch, vibration, temperature, pain, and proprioception
• Urinary incontinence, retention, frequency, urgency, feeling of incomplete voiding.
• Rectal prolapse and atonic pelvic floor in females
• Bowel retention
• Bowel control issues
• Mixed upper and lower motor neuron findings like amyotrophy, hyperreflexia, and up-going planter
• Chronic recurrent kidney infections and stones^[4-5].

What are Tethered Cord Syndrome symptoms in children?

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In children, this Tethered Cord Syndrome may present with^4,5:

• Skin lesions are present in about 80-100% children with this disorder, for example, different types of skin manifestations like hairy patches, dimples, or fatty tumors on lower back
• Weakness of both lower limbs
• Deformities of spine and feet
• Backward or lateral curvature of spine
• Pain in lower back
• Urinary incontinence
• Urinary retention

Sometimes, Tethered Cord Syndrome remains undiagnosed until adulthood, when complaints regarding sensations, motor activities, bowel and bladder control emerge. This late appearance of tethered cord symptoms correlates with the degree of stretch of the spinal cord with passage of time.

Management of Tethered Cord Syndrome

The diagnosis of this abnormality depends upon clinical and radiological criteria. Clinically, patients with such a disorder can present with diffused or localized severe lower back pain, lower limbs weakness with loss of different sensations, muscle atrophy and urinary incontinence. In the past, positive-contrast myelography and intrathecal-contrast computerized tomography were used to diagnose this condition.

At present, MR Imaging is considered the procedure of choice to diagnose the tethered spinal cord. Imaging in patients with this condition shows low conus meddullaris, that is,  below the level of the second lumber vertebra and thickened filum terminale of more than 2 mm.

MRI is very important for visualizing conus meddullaris, estimating the thickness of filum terminale, identifying the traction lesions and getting information about associated bony dysraphisms.

Prone MRI is helpful in patients in whom the clinical suspicion of TCS is very high but the supine MRI showed no abnormality. There is not much value of prone MRI when supine MRI has showed the defect⁶.

Tethered cord surgery is the definite treatment of choice for TCS. Early diagnosis and surgery can prevent the complications of the condition. Tethered cord surgery is performed to free the spinal cord. Other treatment options are symptomatic and supportive. These include⁶:

• Use of pain-killers like NSAIDS and opiates to relieve the pain
• Use of antidepressants for severe pain and discomfort
• Muscle relaxing exercises
• Treatment of urinary tract infection
• Physiotherapy

How is Tethered Cord Syndrome Treated?

Treatment for Tethered Cord Syndrome may involve surgical treatment or close observation. Some patients are asymptomatic during childhood, but a spinal injury may aggravate their symptoms. Patients should receive education about posture, gait, and functional movements. In addition to education, patients with TCS may benefit from an exercise program. This exercise program may help patients walk more comfortably and prevent further problems^[6].

The severity and chronicity of tethered cord syndrome strongly correlate with surgical treatments. Pediatric surgery is usually recommended, as delays may result in irreversible neurological and urological deficits.

(Dr. Peter Sun-Neurosurgeon at UCSF Benioff Children’s Hospital Oakland talks about Tethered Cord Surgery)The risk of delayed treatment is significant, and many patients have experienced worsening symptoms. If a patient does not show any symptoms, surgery is not recommended^[6].

Treatment is based on whether or not the tethered spinal cord can be repaired; however, surgical treatment can help to prevent future deficits. Other forms of treatment that may be offered include:

• Use of pain-killers like NSAIDS and opiates to relieve the pain
• Use of antidepressants for severe pain and discomfort
• Muscle relaxing exercises
• Treatment of urinary tract infection
• Physiotherapy ^[6].

What Happens if a Tethered Spinal Cord goes Untreated?

If a tethered spinal cord is left untreated, it can damage nerves and cause permanent disability.  The good news is that surgical treatment can be done to fix your problem. More than a dozen such surgeries are performed at UNC Health Care each year. Surgery is not always a quick fix, and you may have to go back for another one after several years^[7].

Surgical untethering is usually necessary to repair the spinal cord, stop further neurological deterioration, and restore lost function. Tethered spinal cord syndrome is more common in children, and males and females are equally affected by it^[7].

As the condition gets worse, the spine becomes more stressed, and it is difficult to reduce the amount of pressure on the cord. While it’s not always necessary to undergo surgery, certain activities, like sports, may worsen their condition.

In addition, abnormal spinal curvature and slight flexion of the lower back can aggravate the pain. Often, it’s best to avoid any activities that put stress on the spine^[6-7].

In the worst-case scenario, a tethered cord can lead to paraplegia and loss of bladder and bowel function^[7].

Can You Live a Normal Life with a Tethered Spinal Cord?

Living a normal life with a tethered spinal cord is not quite realistic due to the symptoms that it presents with. However, while the answer to this question varies widely, many people with the condition do live a normal life after surgery.

Surgery is required to correct tethered spinal cord symptoms, but most patients experience no pain following the procedure. Some patients require physical therapy to restore function^[8].

A doctor will first determine the cause of the tethered spinal cord through a series of tests. The symptoms vary but typically include back pain, leg weakness, and sensory deficit. Children may experience growth problems or developmental delays^[8].

(Dr. Holly Gilmer at Michigan Head and Spine Institute preformed a Minimally Invasive Tethered Spinal Cord Surgery for Tyler. Here is his Mother explaining what she went through and what happened.)

Essentially, it is the symptoms that will determine how much of a normal life someone affected by the condition lives. It can be difficult to treat, but with the proper diagnosis, it is possible to lead a normal life despite the condition^[8].

Can a Tethered Cord be Fixed?

A Tethered Cord can be fixed or untethered. This is often the first question worried parents and caregivers ask. Thankfully, particularly with early diagnosis, treatment usually repairs the cord successfully with surgery being the number one choice.

The surgical procedure used to correct the deformity and restore normal spinal function in many patients is a lumbar laminectomy. It is performed by a neurological surgeon ^[9].

For this surgery, the patient will be put to sleep using general anesthesia. To expose and release the affected area of the spinal cord, the surgeon makes an incision in the lower back ^[9].

Is Tethered Cord Painful?

A Tethered Cord can be painful and one may also experience muscle weakness, sensory deficit, and incomplete emptying of the bladder. Because this condition can last well into adulthood, if it doesn’t improve on its own, persons affected by it may have to undergo a surgical repair and other forms of treatment for pain relief. Back pain is most commonly felt; however, it tends to radiate to other parts of the body, such as the hips, legs, and the genital or rectal areas ^[7,10].

The tethering may block the flow of fluids around the spinal cord, causing a build-up of fluid pressure, leading to the formation of cysts. This will account for much of the pain felt and some other associated symptoms.

There are some activities that can make the pain worse, like bending forward, sitting upright with crossed legs, or lifting and holding a moderate weight at waist level ^[7,10].

What Does it Mean When a Baby has a Tethered Spinal Cord?

When a baby has a tethered spinal cord, it means that your child’s spinal cord is pulled down and stuck to the spinal canal. Since the spinal cord is not floating as freely as it should, it stretches.

Then, as your child grows, the spinal cord will stretch, even more, resulting in added stress on nerves over the years. The exact location where the cord ends can differ from one child to the next. Some children will have a small tether at the end of the cord, while others may have a large one ^[10].

A pediatrician may notice skin marks in areas of the back and torso that indicate spinal tethering. The most common markers are an abnormal crease or dimple over the sacrum.

More severe cases may cause scoliosis and differences in leg length and size. Other symptoms include urinary incontinence, constipation, and poop accidents ^[10].

What Is The Success Rate For Tethered Spinal Cord Surgery?

The success rate for tethered spinal cord surgery according to the results of studies of surgical untethering in adult patients is quite complex. The results are typically broken down by symptom and many have shown that pain is the most effectively treated symptom with success rates of 48%–100%^{[ 11-12]}. Researchers determined that there were improvements in patient conditions in all studies with few controllable complications.

Further, surgical treatment is beneficial in most patients, and childhood intervention is better than adulthood. Because the spines of infants and children are much less complex than those of adults, they are better able to tolerate the surgery ^[11]. In nearly every case, this surgery permanently alleviates TCS symptoms, so young patients can develop fully and live normal lives^[12].

The procedure can reduce the size of the tethered spinal cord, but risks include excessive bleeding, infection, and damage to the spinal cord. In addition, tethered spinal cord surgery may lead to permanent damage, such as loss of bowel control, progressive scoliosis, and amputation of the legs.

To help improve surgical success rates, in addition to surgery, patients may also need other medical interventions, including spinal fusion, which creates a solid union between the vertebrae^[12].

What is Tethered Spinal Cord Surgery for Infants?

The tethered spinal cord surgery for infants involves a neurosurgeon cutting a small piece of bone from the spinal column to free the spinal cord from tissue impediments. However, this is a risky surgery and can damage the spinal cord.

On the other hand, successful surgery can correct many issues in infants, including a change in gait and difficulty toilet training, and holding urine in until they can go to the bathroom^[13].

(Video about tethered cord syndrome surgery at Stanford Children’s Health.)

What is Tethered Spinal Cord Surgery for Adults?

Tethered spinal cord surgery for adults is the same as that for children. The detethering surgical procedure will separate the spinal cord from the tissue of the spinal column that is tethering it. In some cases, if the spine is connected to the skin, then that connection is corrected too^[14].

(Emily gives a 1 week update on her Tethered Cord Surgery)

What Happens after Tethered Cord Surgery?

After Tethered Cord Surgery to release the spinal cord, the patient can expect to have a bit of pain and discomfort. Also, your child may remain for post-operative observation for an additional one or two days. They are then discharged when the necessary criteria are met. Your child will be sent home with medications for pain relief and you will also be educated on what to do and not to do regarding the surgical site^[15].

It is encouraged that your child does not get the area wet at all, as this could lead to infection and other complications. If your child is of school age, then return-to-school is typically within a two-week period after surgery. You should also expect scheduled assessments to assess healing and recovery up to two months after surgery^[15].

It will take a few weeks for you to see an improvement in TCS symptoms; however, in most cases, the symptoms are significantly lessened even if not completely resolved. For most children who have tethered cord surgery, it is not hard to predetermine what their results will be ^[15].

Parents will need to follow precise medical instructions and exercise patience to help their child recover as best as possible and to aid the best outcome. Typically, an improvement in back pain and leg pain or numbness are the first to occur. Then you may notice an improvement in bladder and bowel symptoms^[15].

Bear in mind that there are some complications associated with this surgery, including infection and bleeding. Additionally, the procedure may damage the spinal cord, resulting in paralysis or loss of bladder and bowel function. Therefore, keep an eye out for early signs of complications. The surgeon or healthcare team will educate on the warning signals to watch for.

What is Recovery like after Tethered Cord Surgery?

(Video on Tethered Cord Release Surgery Recovery (6 Month Post-Op Update Q&A)

Recovery after tethered cord surgery varies from patient to patient in terms of duration and results. After the procedure, patients will likely require physical therapy and follow-up visits with the treating neurosurgeon^[15].

Rehabilitation programs can help them regain muscle strength and bladder function. Depending on the extent of tethering, follow-up MRIs may be required several months or years later. Some children may require additional surgery if their spinal cord reattaches to tissue. Some children will experience difficulty walking after tethered spinal cord surgery^[15].

What is the Tethered Cord Surgery Controversy?

The tethered cord surgery controversy has largely been centered around a review of the case studies conducted over a few years. One such study published in the New England Journal of Medicine found that a surgical treatment for TCS was effective in preventing further spinal cord degeneration and TCS. In this study, 43 patients were operated on at Zagazig University Hospital.

Each patient was evaluated for neurological and general conditions, and an MRI of the spine was performed before surgery^[12].

MRIs and urodynamic studies were also performed for all patients. The clinical evaluation of these patients was completed after three, six, and twelve months^[14].

The surgery can lead to permanent paralysis. Studies on this procedure have mainly focused on kids with spina bifida, which is a rare congenital defect that causes tethered cords. Most spina bifida patients don’t walk, and their development is delayed^[14].

So, finding out whether the surgery could cause permanent paralysis is difficult, but the results are promising.

References

1. Hertzler DA, DePowell JJ, Stevenson CB, Mangano FT. Tethered cord syndrome: a review of the literature from embryology to adult presentation. Neurosurg Focus 2010;29(1):E1. doi: 10.3171/2010.3.FOCUS1079.
2. Yamada S, Lonser RR. Adult tethered cord syndrome. J spinal Disord 2000;13(4):319-23.
3. Agarwalla PK, Dunn IF, Scott RM, Smith ER. Tethered cord syndrome. Neurosur Clin N Am 2007;18(3):531-47.
4. Yamada S, Siddiqi J, Won DJ, Kido DK, Hadden A, Spitalieri J, et al. Symptomatic protocols for adult tethered cord syndrome. Neurol Res 2004;26(7):741-4.
5. Pang D, Wilberger JE Jr. Tethered cord syndrome in adults. J Neurosurg 1982;57(1):32-47.
6. Ratliff J, Mohaney PS, Kline DG. Tethered cord syndrome in adults. South Med J 1999;92(12):1199-203.
7. Tethered Spinal Cord. (2021, April 8). Columbia Neurosurgery in New York City. https://www.neurosurgery.columbia.edu/patient-care/conditions/tethered-spinal-cord
8. Adults with Tethered Cord Syndrome Find Relief Through Surgery | UNC Health Talk. (2018, July 30). UNC Health Talk. https://healthtalk.unchealthcare.org/adults-with-tethered-cord-syndrome-find-relief-through-surgery/
9. Tethered Spinal Cord Syndrome | National Institute of Neurological Disorders and Stroke. (2022). Nih.gov. https://www.ninds.nih.gov/health-information/disorders/tethered-spinal-cord-syndrome
10. Tethered Spinal Cord – Seattle Children’s. (2016). Seattle Children’s Hospital. https://www.seattlechildrens.org/conditions/tethered-spinal-cord/
11. Potts, M. B., Wu, J.-C., Gupta, N., & Mummaneni, P. V. (2010). Minimally invasive tethered cord release in adults: a comparison of open and mini-open approaches. Neurosurgical Focus, 29(1), E7. https://doi.org/10.3171/2010.3.focus1077
12. Elmesallamy, W., AbdAlwanis, A., & Mohamed, S. (2019). Tethered cord syndrome: surgical outcome of 43 cases and review of literatures. Egyptian Journal of Neurosurgery, 34(1). https://doi.org/10.1186/s41984-019-0029-8
13. Surgery for a Tethered Spinal Cord. (2016, January 13). Weill Cornell Brain and Spine Center. https://weillcornellbrainandspine.org/condition/tethered-spinal-cord/surgery-tethered-spinal-cord
14. Düz, B., Gocmen, S., Secer, H. I., Basal, S., & Gönül, E. (2008). Tethered cord syndrome in adulthood. The journal of spinal cord medicine, 31(3), 272–278. https://doi.org/10.1080/10790268.2008.11760722
15. ‌Tethered Cord Syndrome: What to Expect for Your Child’s Surgery. (2021). Massachusetts General Hospital. https://www.massgeneral.org/children/tethered-cord-syndrome/tethered-cord-syndrome-what-to-expect-for-your-childs-surgery

Old References from Original Article

1. Hertzler DA, DePowell JJ, Stevenson CB, Mangano FT. Tethered cord syndrome: a review of the literature from embryology to adult presentation. Neurosurg Focus 2010;29(1):E1. doi: 10.3171/2010.3.FOCUS1079.
2. Yamada S, Lonser RR. Adult tethered cord syndrome. J spinal Disord 2000;13(4):319-23.
3. Agarwalla PK, Dunn IF, Scott RM, Smith ER. Tethered cord syndrome. Neurosur Clin N Am 2007;18(3):531-47.
4. Yamada S, Siddiqi J, Won DJ, Kido DK, Hadden A, Spitalieri J, et al. Symptomatic protocols for adult tethered cord syndrome. Neurol Res 2004;26(7):741-4.
5. Pang D, Wilberger JE Jr. Tethered cord syndrome in adults. J Neurosurg 1982;57(1):32-47.
6. Ratliff J, Mohaney PS, Kline DG. Tethered cord syndrome in adults. South Med J 1999;92(12):1199-203.

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