Coping Methods For Peripheral Nerve Sheath Tumor
Peripheral nerve sheath tumors (PNST) can be benign and malignant. Benign tumors are neurofibromas, variants of neurofibromas, schwannomas and variants of schwannomas. The malignant type is called malignant peripheral nerve sheath tumors (MPNST). When neurofibromas are associated with other characteristic features it is called neurofibromatosis 1 (NF1). When schwannomas are associated with other characteristic features it is called neurofibromatosis 2 (NF2). Patients with benign PNST have an increased risk of getting MPNST, other than that they have several problems, which affects the quality of life especially when they are diagnosed with NF1 or NF2.
Coping With Disfiguring Skin Bumps In Peripheral Nerve Sheath Tumors
Neurofibromas and schwannomas in peripheral nerve sheath tumors can cause skin bumps, which can occur anywhere in the skin. This is a disturbing problem for many teenage girls and boys as these tumors tend to grow more or appear more during puberty, which can be attributed to the hormonal changes. There is no way to stop the growths or know how much of tumors one will have during their lifetime.
The disfiguration is a significant issue for most of patients and because of this they tend to be less socialized and isolated. They face problems in finding a suitable partner as well. What you should remember is this is a disease that you cannot control, it is not your identity and it will not decide what kind of a person you will be in the future.
Physical appearance does not change your qualities or personality. Most patients have anxiety, depression low self-esteem due to this disfiguration and they need support from a neurofibromatosis specialist, psychologist. Participating in neurofibromatosis support groups, talking your issues with family members and friends can also help a lot.
There are is no cure for neurofibromatosis in peripheral nerve sheath tumors, but there are new treatment modalities to reduce the physical disfiguration to some extent.
Coping With Hearing Loss And Speech Problems In Peripheral Nerve Sheath Tumors
Schwannomas in the vestibulocochlear nerve (nerve which is important for hearing) can cause hearing problems, sometimes even complete hearing loss. Hearing problems are seen in neurofibromatosis 2. Speech difficulties can occur in neurofibromatosis 1. Hearing and speech difficulties can cause learning disabilities and 50% of neurofibromatosis 1 patients have learning difficulties as well.
Surgery is done for peripheral nerve sheath tumor patients who have complete hearing loss or if a small tumor is compressing the nerve to remove it, this might improve hearing. Speech therapy is needed for speech problems. Patients with reading, writing or concentration problems needs special literacy programs and support groups.
Coping With Chronic Pain In Peripheral Nerve Sheath Tumor
Neurofibromas or schwanommas or its variants in the spine can cause chronic back pain, which is devastating situation (neurofibromas commonly occur in the spine) when one is suffering from peripheral nerve sheath tumors. Sometimes even after removal of the tumors the pain remains the same.
If you have severe pain you need to inform your neurofibromatosis specialist and consult a doctor specialized in pain management. Physical therapy also helps to reduce the back pain. Discomfort and pain can sometimes be present when the tumor is bumped somewhere or squashed from a clothing.
Coping During Pregnancy
Neurofibromas and schwannomas in peripheral nerve sheath tumors tend to grow more during pregnancy. Rarely internal tumors can affect the growth of the baby and cause problems during delivery.
The other main worry is if you or your partner is diagnosed with neurofibromatosis there is a 50% chance of the baby getting neurofibromatosis mutation as well. Genetic counseling is offered to couples, but the decision should be taken by the couple.
Peripheral nerve sheath tumors (PNST) can be benign and malignant. Peripheral nerve sheath tumors can be associated with the genetic condition neurofibromatosis 1 or 2. The main problem in patients with peripheral nerve sheath tumors is the disfiguring skin bumps due to the nerve tumors which can occur in anywhere in the body. What you should remember is this is a disease that you cannot control, it’s not your identity and it will not decide what kind of a person you will be in the future. Physical appearance does not change your qualities or personality. Help from a neurofibromatosis specialist, psychologist and talking to neurofibromatosis support groups, family and friends can also help to overcome problems. Surgical removal can be done for hearing problems in some patients. Speech therapy is needed for speech difficulties, and special literacy programs for learning disabilities. Pain specialist is helpful to patients with chronic pain. Genetic counseling is offered to couples when they want to have a baby.