Guide To Effectively Treating Neurofibromatosis

Neurofibromatosis is a genetic disorder that affects the ability of nerve cells to grow and form properly and causes the growth of tumors on the nerves. In most cases, the tumors aren't malignant, though there have been some cases where the tumors become cancerous. Neurofibromatosis has three types. NF1 causes deformed bones and skin changes, with symptoms that generally start during childhood. NF2 causes ringing in the ears, poor balance, and hearing loss, with symptoms beginning during adolescence. Schwannomatosis, the rarest form, causes intense pain. While there isn't a cure, there are treatments that can help with the symptoms. The right treatment depends on the severity of the symptoms.

Stereotactic Radiosurgery

Stereotactic radiosurgery is a radiation therapy that doctors use to treat small brain tumors and functional abnormalities. It's often a good alternative to invasive surgical techniques. When the same therapy is used in the body rather than the brain, it's called stereotactic body radiotherapy. Both methods are typically done on an outpatient basis. Stereotactic radiosurgery involves highly precise radiation accurate to distances of just one or two millimeters.

With traditional radiation therapy, many sessions and doses are required. But stereotactic radiosurgery delivers much higher doses of radiation. The reason this form of treatment is so successful is because advanced radiation technology allows the technique to maximize the dose on the tumors without harming healthy brain tissue.

Cochlear Implants

Some patients with neurofibromatosis 2, or NF2, can benefit from cochlear implants. NF2 generally involves benign tumors on the nerves that affect the inner ears, which can interfere with the brain's ability to receive balance signals and sound information. A cochlear implant can sometimes help with hearing loss or tinnitus. A cochlear implant is a medical device that electronically provides the information a damaged inner ear cannot.

These implants can either go in one or both ears. The patient wears a sound processor to capture sound, which is transmitted into digital code and transmitted into the implant. The implant turns the sound into a series of electrical impulses that travel along the electrodes in the inner ear. These electrodes stimulate the hearing nerve, and then the impulses are interpreted by the brain as sounds.

Surgical Tumor Removal

In some cases, surgical tumor removal is recommended for individuals with neurofibromatosis. It's common for patients with NF1 to develop skin tumors called dermal neurofibromas, which may need surgical treatment if they're irritating or painful. Neurofibromas are not malignant tumors, but plexiform neurofibromas can penetrate more deeply and affect a patient's nervous system.

The presence of these tumors comes with a five to ten percent chance of developing malignant tumors. With NF2, tumors develop on the hearing nerves. It's very possible hearing loss will develop. For this reason, many professionals will recommend surgical tumor removal or other surgical options. Not all patients will benefit from surgery. Surgery is generally recommended only when a patient is experiencing discomfort, or the tumor is cancerous.

Cancer Treatment

The overall risk of developing cancer tends to be low when it comes to neurofibromatosis. In patients with NF1, less than seven percent of patients developed cancer as a result of their illness. However, there are some risks. Cancer usually develops when a benign neurofibroma develops into a sarcoma, which is cancerous and fast-growing. It will invade nearby body structures and may spread to multiple areas in the body. If a patient does develop malignant tumors, it's important for them to get cancer treatment.

There are multiple different treatments available, and the best one will vary depending on the symptoms, though they typically include options such as chemotherapy, radiation, and surgery. Doctors will approach one cancerous tumor differently from cancer that's metastasized through the body. Doctors recommended having yearly screenings and examinations to make sure no cancerous tumors have developed.

Pain Medication

Pain medication becomes important when treating schwannomatosis, the rarest form of neurofibromatosis. With schwannomatosis, patients most commonly experience chronic pain, which can affect any portion of the body. There are cases where pain exists even if no tumors are present in the area. Pain ranges from mild to more severe. Doctors may recommend a variety of medications to help patients manage their pain.

Some medications can help with pain in the nerves. There are also antidepressant medications that can manage both serotonin imbalances and nerve pain. Depending on the presentation of symptoms, some patients may even benefit from epilepsy medications. Managing pain can be difficult, but it's very possible. It's important to talk to a medical professional who's experienced with managing pain associated with schwannomatosis.