Neurofibromatosis : What's in a Name ?

Neurofibromatosis : What's in a Name ?  - Neurofibromatosis is a genetic condition, often hereditary but occasionally occurring spontaneously, in which the myelin sheath and nerves of the Central Nervous System are susceptible to tumor growth. Often diagnosed and treated in children from three to sixteen years old, it can lead to more severe complications if the growing tumor is not caught early and puts pressure on the surrounding tissue. To say, however, that the condition is treated singularly by one doctor is a misnomer.

Neurofibromatosis is often treated by a team of physicians though none are considered to be neurofibromatosis doctors in the sense that the word entails. Rather, the diagnosis will most likely start with the child's pediatrician at a routine visit where darker spots of the skin are observed. These are called cafe au lait spots, and occur all over the body, though rarely on the head. They usually lead to the physician running a battery of tests, the most definitive one being an MRI. Once the diagnosis is identified, the child is often sent to a pediatric specialist.

Since the disease is considered neurological, the next step will most likely be a pediatric neurologist. The neurologist will confirm the disorder and review the options. There is no medication that is used to treat the disease. Surgery is the general route of treatment to remove the tumors, hopefully to alleviate symptoms and cure the child, though there is always a risk of recurrence. The pediatric neurologist may not also be a pediatric neurosurgeon.

The pediatric neurosurgeon will be the one to remove the tumor or tumors. It is a highly specialized surgery and when dealing with the nerves of such a complex system it is quite delicate, but when performed correctly, the side effects are minimal. Most depend on the placement of the tumor and its growth, and there have been cases of nerve damage though the effects are slight.

After removal, the prognosis is considered positive that the child can go on to live a full and often uninterrupted life. Since over ninety percent of the tumors are benign, it is rare to have to continue on to a pediatric oncologist, but to say that it does not occur is misleading. In the slight chance that a removed tumor is found to be cancerous, the referral will continue on to a pediatric oncologist.

When dealing with a condition such as neurofibromatosis, it's a team approach rather than an individual case. So every doctor has the potential of being a neurofibromatosis doctor rather than a singular specialized physician.

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