Neurofibromatosis patients can face many complications, including hearing and vision problems, learning disabilities and pain caused by tumors. It’s important for patients to get their care from a team of experts who can handle all of these challenges.
That’s where MD Anderson can help. For children with NF, we have a program that works with schools to develop an educational plan and find ways to help them learn. Adults and children both can see specialists in treating tumors that affect the eyes and the ears, as well as surgeons who can operate on tumors on practically any part of the body. We also have specialist in managing NF-related pain and we offer genetic counseling for adult NF patients who want to start a family.
And if a tumor does become cancerous, our NF patients have access to all the care at one of the nation’s top cancer centers.
Neurofibromatosis is a progressive disease. Patients need to be monitored on an ongoing basis to manage their specific symptoms. Treatment for the diseases depends on the location and type of tumor(s) present.
- For growing pediatric brain tumors, the standard treatment is chemotherapy, but surgery and radiation may also be required.
- Peripheral nerve and spinal tumors are treated with surgery, and malignant nerve and spinal tumors are treated with a combination of surgery, radiation and chemotherapy.
- Treatments of bones of the arms and legs and for scoliosis is managed by our Orthopaedic Center.
- NF-related growth disorders are seen by our endocrine service.
- Other, less frequent issues are managed by specialists throughout the hospital.
Since NF is often diagnosed in children, the Children's Cancer Hospital has developed a program that gives these patients with educational support. The Children's Cancer Hospital also provides a pediatric neuropsychologist to determine any learning disabilities the patient may be facing.
The most innovative treatments for neurofibromatosis are offered as part of clinical trials, which are closely monitored studies to test the safety and effectiveness of new treatments. You can also visit our clinical trials database or speak to your doctor to see if you or your child are eligible.
MD Anderson patients have access to clinical trials offering promising new treatments that cannot be found anywhere else.
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