Pain often occurs in all types of NF, and the most common symptom of schwannomatosis is chronic pain caused by benign (not cancerous) schwannoma tumors. These tumors can develop anywhere and press on the peripheral nerves associated with that part of the body. Some people have schwannomas and associated pain in multiple areas.
NF patients may also experience referred pain, which is pain in a part of the body where there is not a tumor. An everyday example of referred pain is drinking a really cold liquid or eating ice cream and then having the painful sensation of your brain freezing. However, it is not your brain that is actually freezing. The source of the pain comes instead from the nerves behind your nose. Referred pain can sometimes make it hard for doctors to identify the location of a tumor, which can make the condition difficult to diagnose and treat. It can sometimes take months to years before the location of a tumor is identified.
Pain management is usually an integral part of care, especially if surgical removal of tumors isn’t possible, or if pain does not go away. Patients are best served in a clinic where multidisciplinary specialists experienced in schwannomatosis can administer pain management protocols that have been shown to be effective for people with this condition.
The Children's Tumor Foundation has sponsored a number of helpful webinars and panels to help NF patients cope with pain. Please click the links below to watch these informative conversations by experts and patients.
NF Summit 2022: Expert Panel; Pain in NF1, NF2, and Schwannomatosis
Pain can play a signficant role in the life of someone living with a chronic condition. Learn about the various approaches to managing and treating pain from experts in the field. Speakers: Frank Buono, PhD; Staci Martin, PhD; Kaleb Yohay, MD; Charles Argoff, MD
https://youtu.be/A9PITIzIuJs
NF2 and Schwannomatosis Webinar: Pain in Schwannomatosis
This Children's Tumor Foundation educational webinar was recorded in April 2022. A panel of experts in neurofibromatosis and schwannomatosis discuss the issue of pain in NF2 and schwannomatosis.
https://youtu.be/8MFBab8qFqI
Ask the Expert Webinar: Resiliency Skills with Ana-Maria Vranceanu, PhD
This webinar covers coping strategies and resiliency skills for individuals living with all types of NF, with a specific focus on pain management.
https://youtu.be/cqCidMJtIWQ
