To understand a neurofibroma, it's good to understand how a nerve works, first.
Here is a diagram of a nerve. (Don't fret that it's from a multiple sclerosis website. That doesn't apply to you. It's just the best diagram I found that showed what I wanted on the nerve.)
There are a lot of components in the nerves, but what we're interested in is the myelin sheath, or the covering of the nerve. It appears sort of sea-green in that diagram. Its purpose is to help speed along messages through the nerve system in your body.
There are millions and millions (some say more than a billion) nerves and nerve endings in your body. A Neurofibroma is a benign growth in the myelin sheath of a nerve. The reason it can cause pain is (a) depending on its location, it can press against the nerve and trap it in a small area (within the spine, for instance, or within the carpal tunnel of the wrist) or (b) if it grows large enough, it can press against something else in the body and cause pain that way.
If you have just one, it's called a neurofibroma. If you have more than one (some people have several or many), it's called neurofibromatosis. It's a genetic condition; do you know if either of your parents (or even grandparents) have had neurofibromas?
Did your doctor say whether your neurofibroma was dermal or plexiform? Those are fancy words, here's what they mean. Dermal neurofibromas commonly look like small lumps and bumps just under the skin -- like very bad acne, for instance. They increase in size and number as a person ages. Wikipedia cites The American Journal of Pathology as saying that "While dermal neurofibromas can lead to stinging, itching, pain and disfiguration, there is no evidence of malignant transformation." That means they rarely if ever change into a malignant growth.
Plexiform neurofibromas can be larger, and they can grow either just under the skin or in nerve bundles deeper inside the body. They are usually congenital, which means you've probably had it since birth and haven't known it. They can be difficult to remove because they travel through different layers of tissue, which could be damaged surgically. About 90% of plexiform neurofibromas stay benign; however, about 10% can change and become malignant. If this is the kind of neurofibroma you have, you will want to ask the doctor about the following:
1. Is this a plexiform neufibroma?
2. If so, will you want to do surgery or leave it alone?
3. If you do surgery, what are the dangers?
4. If we leave it alone, what are the risks?
5. If we decide to watch it for a while, how long until we check it again?
Usually, plexiform neurofibromas are removed surgically. Even though there's just a 10% chance that it would turn malignant, it's easier to take out while it's benign. And just because it's benign doesn't mean it can't grow further, causing you more pain or difficulty.
One of the best explanations of the condition that I found comes from Children's Hospital Boston:
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Damilola,
To understand a neurofibroma, it's good to understand how a nerve works, first.
Here is a diagram of a nerve. (Don't fret that it's from a multiple sclerosis website. That doesn't apply to you. It's just the best diagram I found that showed what I wanted on the nerve.)
http://scamparoo.wordpress.com/2008/09/30/diagram-myelin-sheath-and-nerve/
There are a lot of components in the nerves, but what we're interested in is the myelin sheath, or the covering of the nerve. It appears sort of sea-green in that diagram. Its purpose is to help speed along messages through the nerve system in your body.
There are millions and millions (some say more than a billion) nerves and nerve endings in your body. A Neurofibroma is a benign growth in the myelin sheath of a nerve. The reason it can cause pain is (a) depending on its location, it can press against the nerve and trap it in a small area (within the spine, for instance, or within the carpal tunnel of the wrist) or (b) if it grows large enough, it can press against something else in the body and cause pain that way.
If you have just one, it's called a neurofibroma. If you have more than one (some people have several or many), it's called neurofibromatosis. It's a genetic condition; do you know if either of your parents (or even grandparents) have had neurofibromas?
Did your doctor say whether your neurofibroma was dermal or plexiform? Those are fancy words, here's what they mean. Dermal neurofibromas commonly look like small lumps and bumps just under the skin -- like very bad acne, for instance. They increase in size and number as a person ages. Wikipedia cites The American Journal of Pathology as saying that "While dermal neurofibromas can lead to stinging, itching, pain and disfiguration, there is no evidence of malignant transformation." That means they rarely if ever change into a malignant growth.
Plexiform neurofibromas can be larger, and they can grow either just under the skin or in nerve bundles deeper inside the body. They are usually congenital, which means you've probably had it since birth and haven't known it. They can be difficult to remove because they travel through different layers of tissue, which could be damaged surgically. About 90% of plexiform neurofibromas stay benign; however, about 10% can change and become malignant. If this is the kind of neurofibroma you have, you will want to ask the doctor about the following:
1. Is this a plexiform neufibroma?
2. If so, will you want to do surgery or leave it alone?
3. If you do surgery, what are the dangers?
4. If we leave it alone, what are the risks?
5. If we decide to watch it for a while, how long until we check it again?
Usually, plexiform neurofibromas are removed surgically. Even though there's just a 10% chance that it would turn malignant, it's easier to take out while it's benign. And just because it's benign doesn't mean it can't grow further, causing you more pain or difficulty.
One of the best explanations of the condition that I found comes from Children's Hospital Boston:
http://www.childrenshospital.org/az/Site1085/mainpageS1085P0.html
Here is another hospital's overview of the condition:
http://brainsurgery.upmc.com/conditions-and-treatments/neurofibroma.aspx
Is this information helpful? Do you have more specific questions? And can you tell me what your doctors say the next step is for you?
June 29, 2009 - 8:31amThis Comment
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