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 Intensity and Frequency
The intensity (how much) and frequency (how often) of pain experienced by each person with schwannomatosis is unique to that person. Some people with schwannomatosis have a low level of pain and they don’t experience pain very often. Other people with schwannomatosis experience frequent and severe pain that interferes with their daily lives and needs medical intervention.
Medical Management of Pain
Pain management is usually an integral part of care. 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. Treatment may include the use of pain medications, physical therapy, cognitive behavioral therapy, and/or procedures such as nerve blocks. If there are not any specialty clinics near you, pain management might require reaching out to several different types of specialists to come up with a good pain management plan. You can search for an NF specialist on our Find a Doctor page HERE.
Surgical Intervention
When a schwannoma causes significant pain or neurological deficits, surgical removal may be an option. This approach may provide relief if the tumor is accessible and the potential benefits outweigh the risks. However, schwannomas may regrow, or new schwannomas may develop, causing symptoms to recur. Additionally, for some people with schwannomatosis, surgery may not reduce pain and may lead to an increase in painful symptoms. Surgery may also be considered for people who have tumors that are causing neurological (related to the nerves in the brain and spine) or organ-related complications.
Anytime surgery is considered, it’s important that a surgeon experienced in schwannomatosis care be involved to ensure the best possible outcome. Deciding to have surgery is a complex decision and talking with doctors, psychologists and other counselors, along with family and friends can help patients decide if surgery is right for them.
Emotional Support and Self Care
Psychological counseling and emotional support can be extremely important for patients managing pain. It can also be helpful if a person has feelings of anxiety or fear associated with having a genetic condition Psychologists and counselors trained to assist with pain management strategies can teach you skills, self-care and resiliency strategies to help you live a full and active life. Pain management clinics often include psychologists specializing in this type of support, but you can also ask your doctor to refer you to this type of psychologist or counselor. The American Association of Pain Psychology has a helpful resource to help search for a pain resiliency specialist HERE.
Webinars about Pain and Resilency
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 2024: How We Study Pain in Neurofibromatosis and Schwannomatosis
Information about pain research, presented by Scott Plotkin MD, PhD
https://youtu.be/lqnOLmUjulo - 2023 NF Summit: Expert Panel – Whole Person Health – A Multidisciplinary Approach to Pain Management
https://youtu.be/sFMvt_lMNLg - NF Summit 2022: Expert Panel; Pain in NF1, NF2-SWN, and SWN
Pain can play a significant 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-SWN 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-SWN 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
Updated December 13, 2024
