When a young woman needed a novel way to manage a painful, congenital medical condition, she turned to Weill Cornell Medicine (WCM). It was a step toward achieving a lifelong dream to experience a more independent, physically comfortable life – one that would eventually allow her to start a family.
The patient was born with arthrogryposis, a condition that reduces the flexibility and movement of the joints, or causes joints to be fixed. Typically present in the hands or feet, the lack of movement also can cause patients to develop muscle abnormalities.
Dr. Neel Mehta, division chief of Pain Management at Weill Cornell Medicine and NewYork-Presbyterian Hospital, worked with the young woman and shares her story.
Throughout her life, this patient’s arthrogryposis caused ongoing pain in her ankle, heel and toes, as well as pain from an entrapped nerve. She sought relief from numerous specialists and treatments, including special orthotics and braces. Additionally, she had already undergone multiple surgical procedures that led to a buildup of scar tissue, further reducing her movement and exacerbating her pain.
“She reported a 10 out of 10 intense burning pain,” Dr. Mehta says. “The pain limited her standing and walking, she couldn’t be independent and drive, and her job was difficult to perform since she had to be on her feet.”
The patient eventually found some relief with medication, but there was a catch: she was married and wanted to start a family.
“She was taking medication commonly used for seizures that is useful in relieving nerve pain,” Dr. Mehta explains. “It gave her the quality of life to be functional as an adult, but when she wanted to have a family, she couldn’t.” The medication has not been tested on pregnant women and thus shouldn’t be used during pregnancy.
“We started to discuss spinal cord stimulation,” Dr. Mehta recalls. “It’s a unique device targeted to the nerves to the foot, and is able to do more than some other devices on the market.”
WCM Pain Management physicians are adept at treating patients with the device – a dorsal root ganglion stimulator – to manage leg pain from spine-related causes. Although the use of the device for this young woman’s foot and ankle pain was not typical, Dr. Mehta felt she would benefit from the procedure based on his expertise. Eighty percent of the more typical patients fitted with the device report a 50 to 75 percent reduction of pain.
“The implant uses electrical activity to slow down, or even reduce, the number of signals of the pain nerve from the affected area,” Dr. Mehta explains, comparing it to a pacemaker.
The stimulator is unique in medicine—one the few treatments that allows for a trial run before the actual full implant. During the first procedure, the doctor places temporary wires outside the spine with a needle and connects them through the skin to an external battery worn as a sticker.
The patient goes home to see if the device helps relieve pain and improve function throughout their day and activities.
If the patient finds relief, the temporary device is removed, and later the physician places a permanent device under the skin in a minimally invasive fashion. On the other hand, if there is no improvement, the wires are removed and a simple band-aid is placed.
“The battery itself has a lifespan of about 10 years,” Dr. Mehta says of the stimulator. “It’s a small surgical procedure with remote programming for a system that has input from the patient to say what sort of stimulator intensity they need.”
Patients generally feel nothing other than pain relief. Sometimes they may feel tingling or a buzzing which can be easily adjusted.
Patients with stimulators can live their lives independently and normally. They can shower, swim, and use a medical card for permission to be patted down at airports instead of going through x-ray machines and metal detectors, just as they would for any other medical device. Insurance generally covers the cost of the stimulator and associated procedures, and recovery time is minimal. Patients periodically visit the pain management team to make sure the device is operable and the patient is comfortable.
And Dr. Mehta’s patient? The stimulator has offered her pain relief that has allowed her to drive, work – and stop taking pain medication so she could safely start a family.
Her baby is nearly a year old.
“Her goal was to be able to do what she loves and start a family,” Dr. Mehta says. “The patient is very happy.”