Schwannoma is a type of tumor that develops in the nervous system. It’s called schwannoma because this type of tumor grows from cells called Schwann cells, which form the protective sheath around your nerve cells. Schwannoma is a rare condition, and when it does occur, it is almost always benign, meaning non-cancerous. This disease affects fewer than 200,000 people, although schwannoma is the most common type of peripheral nerve tumor.

Schwannoma can occur anywhere in the body and is usually slow-growing. In 90% of cases, Schwannoma consists of a single tumor, as opposed to conditions where multiple tumors are common. The most common place to find Schwannoma is the inner ear, where there is a nerve that connects to your brain. This is known as vestibular schwannoma and accounts for about 60% of cases. Vestibular schwannoma is considered a type of brain tumor.

It’s very possible to have schwannoma and not know about it. In fact, because these types of tumors grow so slowly, there often aren’t any symptoms for years. People also experience a wide variation in symptoms depending on where in the body the schwannoma occurs. Common symptoms include a visible lump, numbness, aching or burning pain, and muscle weakness. 

If you have vestibular schwannoma—again, that’s the variation that’s near your inner ear—you may suffer from hearing and balance issues. Tinnitus, which is a ringing in the ear, may also occur.

If you have schwannoma in your arm or leg, you may experience pain or weakness in that limb. If you have schwannoma in your face or neck, symptoms may include facial paralysis, swallowing issues, and loss of taste. 

It’s also possible for schwannoma to grow on a nerve root in the spinal cord, where the resulting symptoms can also range from mild—like tingling—to severe—like intense pain or paralysis.

Schwannoma is usually diagnosed with imaging tests. It’s common to have a schwannoma for several years before even starting a conversation with your doctor, and many people don’t discover they have a schwannoma until they are seeking treatment or image testing for another condition. MRIs, CT scans, and ultrasounds are all imaging tests that can reveal the presence of this tumor type. 

Because schwannomas vary so much depending on their location, you will want to discuss schwannoma treatment options with your physician. 

Your treatment plan will also depend on whether your schwannoma is malignant. Again, the vast majority of schwannomas are non-cancerous, and a biopsy can confirm your specific diagnosis. Schwannomas are only malignant in about 5% of cases, at which point they become known as soft tissue sarcomas or malignant peripheral nerve sheath tumors.

If your tumor is malignant, or even if it is just growing quickly and causing symptoms that decrease your quality of life, surgery may be the best option. In that case, you’ll want to work with a neurosurgical partner who understands your specific needs and concerns. Cancerous schwannomas may also merit immunotherapy or chemotherapy.

The goal of schwannoma surgery will be to remove the tumor with as little damage to the nerve as possible. Sometimes your surgeon will not be able to remove the tumor without some damage to the nerve, in which case your surgeon should have a plan for repairing that nerve as part of the procedure.

However, it may be possible that your tumor is both benign and slow growing enough that surgery and other treatments aren’t required. In that case, your doctor may just want to monitor your schwannoma and check its size with imaging tests at regular intervals.

Schwannomas vary so much that there is no one-size-fits-all recovery process. As with any surgery, you should consult your physician to determine what to expect in your specific case. For instance, if you are having surgery for a schwannoma in your arm, you may need a splint to keep your arm in a healing position afterwards, and it’s possible that your physician will recommend a physical therapist to recover from any nerve damage that was necessary for the removal. 

The symptoms you experience after surgery will also greatly vary. Sometimes the symptoms of vestibular schwannoma can continue for months after the procedure. In other areas of the body, muscles may not improve for years, and sometimes the weakness caused by the schwannoma is permanent.

All in all, schwannoma is a broad term for nerve-sheath tumors of wide-ranging severity. If your symptoms are causing concern, drawing on the expertise of an experienced neurosurgical partner will be your best bet. They will be able to determine what combination of monitoring and surgery will match your needs.