Does This Match What You’re Experiencing?

Schwannomatosis is rare. Not every person with these symptoms has it. But the symptoms above describe a pattern — and if that pattern has been yours for years without a name, it is worth asking the question specifically.

◈Constant or near-constant pain — not explained by injury, arthritis, or a clear structural cause

◈One or more schwannomas confirmed on pathology — even years apart, even at different institutions — especially if additional tumors are visible on imaging

◈Pain that does not map to a single nerve or a single location

◈Pain that was attributed to stress, anxiety, or psychiatric causes without resolution

◈Pain that spreads or radiates in ways that don't match imaging findings

◈A family history of schwannomas, NF2, or tumors on nerves

◈Hearing loss plus other nerve symptoms — especially bilateral

◈Schwannoma(s) removed, with return of pain or new tumors

◈Facial pain with dental work that never resolved it

◈A diagnosis of fibromyalgia or central sensitization that never felt complete

If you have already had a schwannoma removed and the pathology is confirmed: You already have the most important piece — a tumor on a slide. That tissue, if saved, can be submitted for genetic testing alongside a blood or saliva sample. Ask your surgeon or oncologist: “I have had [N] schwannomas confirmed on pathology. I would like a referral for genetic testing and an evaluation at an NF specialty clinic. Can you refer me to a genetic counselor who has experience with schwannomatosis or neurofibromatosis?”

If you have not yet had surgery but suspect another tumor: Do not skip the imaging step. Clinical guidelines for schwannomatosis (Evans DG et al., ERN GENTURIS, European Journal of Human Genetics, 2022) recommend a full-body MRI to map all tumors before surgical decisions are made. If a new pain feels exactly like the one you had removed — same quality, different location — ask your doctor: “Can we get a whole-spine and/or total-body MRI to assess for additional tumors before we proceed? I want to understand what we are dealing with before we operate.”

On choosing a surgeon — for every SWN patient: Schwannomas grow on the surface of the nerve — they ride along the nerve sheath rather than growing through it, which is what makes skilled removal possible without cutting the nerve. Neurofibromas are different: they entangle into the nerve itself, making complete removal without nerve damage much harder. Hybrid tumors have features of both — they can look like a schwannoma on imaging but behave like a neurofibroma at the surgical level, and require proper pathological analysis to identify. Removing any of these incorrectly can permanently damage the nerve. Before any tumor removal, ask: “How many schwannomas has this surgeon removed? Do they have experience with peripheral nerve tumors specifically?” A surgeon who is experienced in peripheral nerve tumor removal gives you a significantly better chance of preserving function. This is worth traveling for.

Sources: Schwannomas displace rather than infiltrate nerve fascicles — Mairura et al., Clinicopathological study of peripheral schwannomas, PMC8118219. Neurofibromas infiltrate and encase fascicles; schwannomas do not — Tos et al., Schwannoma and Neurofibroma of the Ulnar Nerve, PMC7487326. Hybrid schwannoma-neurofibroma tumors in schwannomatosis are diagnostically challenging and frequently missed without proper pathology — Hybrid neurofibroma/schwannoma in schwannomatosis, PMC12628404.

The University of Alabama at Birmingham (UAB) Medical Genomics Laboratory performs the highest volume of NF genetic testing in the world. Their schwannomatosis panel covers NF2, SMARCB1, and LZTR1. The newer subtypes — SMARCE1 and DGCR8 — are not yet on this panel; they are recent enough discoveries that few labs have added them to standard offerings. The panel costs approximately $1,500 for blood or saliva — that is the self-pay rate. Insurance sometimes covers it when a clinician orders it with documented clinical indication (2+ pathology-confirmed schwannomas). Prior authorization is almost always required and is frequently denied on the first attempt. Appeal if denied. UAB Schwannomatosis Panel →