Tethered Spinal Cord

Symptoms of tethered cord progress over time as the child grows older. Some of the signs and symptoms your child will experience or reports to you include:

• Problems controlling bladder or bowel movements
  

• Pain and weakness in the legs or feet
  

• Pain in the back, which worsens with activity
  

• Scoliosis – abnormal curvature of the spine
  

• Fatty tumour or deep dimple on the lower back

• Numbness and tingling in the back
  

• Deterioration in gait
  

• Muscle contractions
  

• Tenderness in the spine​​

Your child’s doctor will ask you detailed questions about his/ her symptoms as part of diagnosing a tethered cord. These questions will be about his/ her symptoms, their specific characteristics, and how they have progressed. Thereafter, a physical examination will be conducted in which your child’s doctor will feel the lower back for any tender spots and ask him/ her to change position to see how pain is affected by movement. 

Ultrasounds in newborn babies less than three months of age can also be used for diagnosis as their bones have not thickened yet. This will show details of the end of the spinal cord and also if a tethering obstruction may be holding the cord taut. It can also help identify any tumours or fatty masses at the end of the spinal cord.

Other diagnostic tests for older children include:

• Magnetic Resonance Imaging (MRI) – helps generate three-dimensional images of the spinal canal and its structures
  

• X-rays to detect abnormalities in the bone structure
  

• Computed Tomography (CT) scans of the lower back – gives detailed information about an abnormality in the child's spine
  

• Myleogram – it’s like an X-ray of the spinal canal with the help of a contrast material. It helps show pressure on the spinal cord or nerves due to a tethered spinal cord
  

• Urodynamics testing and urology consultation — since the nerves at the bottom of the spinal cord control bladder function, your child may have problems with bladder control, which can be identified through these tests and consultation with a urologist​

Tethered cord is a very treatable condition, especially when diagnosed and treated early in the child's life. Generally neurologists recommend early surgery to treat this condition in a growing child to prevent chances of deterioration of nerve function later in life. 

The scope and extent of surgery will depend on your child’s overall health and well-being, as well as the cause and location of the tethering. Either the tissue scar, the tumour or mass causing the tethering is or, at times, a tiny portion of the vertebrae will be removed to allow the spinal cord to move freely. 

Before or after surgery, your child may also be recommended the following as part of the treatment plan:

• Pain-relieving medications for management of pain
  

• Physical and occupational therapy to build muscle strength and improve motor skills​

Possible complications in surgery for untethering the spinal cord will depend on the complexity of the problem. In some cases, a minor incision may suffice. On others, a more involved procedure may be required, such as in the case of a fatty mass or tumour causing the tethered cord. In case of a fatty mass or tumour enveloping sensitive nerve roots responsible for strength and sensations in the legs, bowel or bladder, the risks may be higher. 

Post-surgery, recovery of muscle and bladder function will also depend upon the condition of your child’s tethered cord prior to surgery. Complications such as infection, bleeding, damage to the spinal cord, or nerves responsible for bladder or bowel function are possible. In many cases, repeat surgery may be required as the child grows further.

You must make sure that you discuss your child’s individual case and all these possible complications in detail with the neurologist. Weigh the risks of surgery against the benefit of helping your child lead a normal, active life to make an informed decision before going ahead with treatment. ​

The Aga Khan University Hospital offers various support services to help with managing or recovering from the disease or condition. These include but are not limited to nutrition, physiotherapy, rehabilitation, specialized clinics and some patient support groups. Your doctor or nurse will advise you accordingly.

The Aga Khan University Hospital offers financial assistance to those who are in need and fulfil the eligibility criteria. For further information, you can contact the Patient Welfare Department. You can find the contact number of the Patient Welfare Department in the ‘Important Numbers’ section on the website homepage.

The financial counselling staff is available during office hours, at the main PBSD (Patient Business Services Department), to answer your financial queries on treatments’ costs and authorize admissions on partial deposit as per hospital policies allow. The financial counsellor in the emergency room is open 24/7. You can find the contact number of the Patient Business Services in the ‘Important Numbers’ section on the website homepage.​