Progressive Pain in a Non-Progressive Disability: How Dr. Hyman Treats Chronic Pain in CP Patients

Since he joined Columbia Orthopedics in 2000, Weinberg Family Cerebral Palsy Center Associate Director Joshua E. Hyman, MD has been an advocate for treating patients with cerebral palsy. Although CP isn’t progressive, there is a common symptom that could become more prevalent or intensify as patients grow older: chronic pain. Dr. Hyman is discovering ways to ease it.

Why Patients with CP

When he started, Dr. Hyman was one of the few pediatric subspecialists at NewYork Presbyterian Hospital to focus on caring for CP patients. He decided to work with CP patients in particular because he believes that developmental disabilities are often overlooked in the medical community.

“Too often they get treated by generalists and may not get optimal care,” said Dr. Hyman. “I think that they are deserving of subspecialty care and people who have a primary interest in their conditions and issues and are willing to focus attention on it.”

Although his focus is on pediatrics, as his patients age, he’s come to see more young adults, mainly in their 20s. It’s part of a larger trend in his career and the transitional care offered by the CP Center. He has more adult patients than ever, which has also impacted his research interests in hip pain.

Assessing Chronic Pain

Pain in pediatric patients is mainly treated non-operatively and can be easily managed if caught early. However, as patients reach adulthood, pain resulting from arthritis or hip joint displacement becomes more common.

“I tell them pain may currently be part of their lives but it doesn’t have to be,” said Dr. Hyman. “It may happen but it’s treatable. It’s possible they will have pain but it’s not necessary or normal to have pain. If they do, it’s a warning sign just like with anybody else and it does need to be evaluated.”

To effectively analyze it, the CP Center is researching an assessment measurement tool to understand chronic pain. Dr. Hyman’s focusing on how hip problems can result in chronic pain and how it impacts patients’ daily lives.

“It ranges from just tightness to the hips coming out of joint and developing dislocations and, when that happens, they can develop intractable pain,” said Dr. Hyman. “They become very stiff and it can become difficult for them to sit. It also becomes very difficult to care for them and move their legs around for bathing and dressing.”

Assessing Pain in Complex Cases

For some CP patients, it can be a little bit more challenging to diagnose pain, especially if they have medical issues that may cause pain. They’re often misdiagnosed by inexperienced general practitioners because they claim their pain is a result of their CP.

“Sometimes, somebody comes in with pain around their hip and it has nothing to do with their hip,” said Dr. Hyman. “It may be an abdominal process, appendicitis, or an ovarian cyst. So we need to assess it closely to find the precise cause of it.”

Besides comorbidities, some severe types of CP can also make it more complicated to assess pain. If a patient is nonverbal, it can take a longer time before a definitive diagnosis can be made.

“We need to speak closely with their caregiver whether it’s their parents or a nurse or some other professional caregiver that knows that person well – and it can take time,” said Dr. Hyman. “It may take weeks or months. Sometimes you simply have to go down a checklist of evaluating what likely pain triggers might be.”

Treating Chronic Pain

Once he and his team recognize the origins of the chronic pain, Dr. Hyman has numerous means to tend to it outside of surgery.

“If it’s musculoskeletal, we may start with an anti-inflammatory medication, we may change their physical therapy, we might change their seating if we think that is causing a problem,” said Dr. Hyman. “Sometimes it can be from braces that aren’t fitting properly. And if that’s not helpful and we think it’s from spasticity or from muscle tightness, we might reach out to our rehabilitation medicine colleagues and ask them to both assess the patient as well as consider treatment with botox, which can be very effective.”

The CP Center currently has multiple research projects devoted to improving pain management. Dr. Hyman hopes that the result of his research and advocacy will not only help his own team optimize their diagnoses of CP patients but shape how practitioners throughout the world treat them.

“The key is to be vigilant and don’t assume that it’s just the normal part of having CP and they have to live with it,” said Dr. Hyman. “That’s not right.”