Schwannomatosis is a rare form of NF (nerve fascicles) that has only recently been recognized. People with schwannomatosis develop multiple schwannomas on cranial, spinal and peripheral nerves--but they do not develop vestibular tumors and do not go deaf. Affected individuals usually have much greater problems with pain than with neurological disability, although as with all forms of NF, schwannomatosis may vary greatly between patients.
They also do not develop any other kinds of tumors (for example, meningiomas, ependymomas or astrocytomas) and do not have learning disabilities. For reasons not yet understood, people with schwannomatosis have problems with chronic pain that often exceeds their neurological problems.
The first symptom of schwannomatosis is almost always pain, which can occur in any part of the body. Many patients with schwannomatosis go several years before the source of their pain is realized because they have few or no neurological symptoms. Once a tumor is found, it is important to determine its pathological type by examining a piece of it under a microscope.
Patients with schwannomatosis are always found to have schwannomas, not Neurofibromatosis. For reasons not yet understood, about 1/3 of patients with schwannomatosis have tumors limited to a single part of the body, such as an arm, a leg or a segment of the spine.
Once a person is found to have multiple schwannomas, the possibility of NF2 must be excluded before a diagnosis of schwannomatosis is given. In an older person with no hearing loss, NF2 is unlikely.
In a younger person, or in any person with hearing loss and multiple schwannomas, it is imperative that a high quality MRI scan of the base of the brain be done to exclude the possibility of vestibular tumors and NF2. At the current time there is no "blood test" to determine if a patient has schwannomatosis.
Surgical management of schwannomatosis is often quite effective. When tumors are completely removed, pain often subsides -- although it may recur if new tumors form. When surgery is not feasible, management in a multidisciplinary pain clinic is advisable. There is no currently accepted medical treatment or drug for schwannomatosis.
Because schwannomatosis has been a relatively recent "discovery," there are no set schedules of tests that all patients should undergo. The tumors of schwannomatosis are relatively slow growing, and probably only need to be imaged when symptoms change. Schwannomatosis is a genetic condition, but may often skip generations so that more distant family members with unexplained neurological symptoms and/or unexplained pain should be evaluated for the possibility that they are also affected.
Schwannomas
Both schwannomas and Neurofibromatosis originate in the insulating covering of peripheral nerves called the nerve sheath. Schwannomas are very homogenous tumors consisting ONLY of nerve sheath cells or Schwann cells. They stay on the outside of the nerve, but may push it aside or against a bony structure causing damage. Neurofibromatosis are very heterogeneous tumors which incorporate all sorts of cells and structural elements in addition to the Schwann cells. They infiltrate the nerve and splay apart the individual nerve fibers. Neurofibromatosis sometimes degenerate into cancer, but for reasons that we do not understand, schwannomas never do.
The nervous system is divided into the central nervous system (CNS –the brain and spinal cord) and the peripheral nervous system (PNS – the nerves that come our from the spinal cord and go to the muscles, skin, and end organs). The division between the CNS and PNS is not arbitrary – there are real physiological differences between the two. One difference relevant to our discussion is that PNS nerve can regenerate, while CNS nerves do not
The PNS nerves can completely regenerate, but there are some functional limitations to this. First, if there is ongoing damage – like in a diabetic patient – the cause of the damage will also prevent regeneration. With traumatic injury an anatomical limitation may be present. If the nerve is completely severed then there may not be a physical path for the nerve to grow along. Without a path to follow the nerve may not regrow at all, or it may not end up in the right place, or it may just grow into a curled up ball of nerve fibers. There is also a time limit for restoring muscle function. Muscle fibers will only survive without nerve supply for about 18 months. So if the nerves to not reconnect by then, there will be no muscle fibers to connect to when they finally reach their destination
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2007-10-16 15:44:33
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answer #1
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answered by rosieC 7
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Nerves don't really grow back under normal conditions. The best bet would be stem cells (autologinous would be best). But until then, try to think positively. You can walk when they said you couldn't. You may be able to run with some work and practice. Look on the bright side of this! Don't worry so much. Besides, having numbness is much better than having pain, after all. Keep working at it, and don't take everything doctors tell you at face value (my mother has MS, and so I know how often they lie, or make **** up because they don't know for sure). You can walk. That is most important. Try for more. Try jumping, and running. Just make sure you are in a safe environment when you do it.
If you need to talk to someone about this (I know more about numbness and living with it, including living a normal life with it) you can add me to contacts and chat with me if you like. Having numbness in your leg shouldn't really stop you from doing whatever you like (just watch out for scratches, cuts, or otherwise on the numb area).
I changed my settings so you can email me.
Okay, last add on! I talked to my mom. She says that most nerves grow at about an inch a year. So, as long as the entire nerve isn't gone (and from the sound of it, it isn't) it may very well grow back! So, chin up, feel good, and think positive!
2007-10-16 21:54:34
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answer #2
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answered by Kardrinalin 2
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sorry hun but i belive u will have numbness but u can walk and that is a miracle in it self im sure u will get use to it after a while
2007-10-17 12:10:25
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answer #3
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answered by samiyahlynn 2
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it's possible the nerves could regenerate, but not likely = be happy you're alive and can walk
2007-10-16 21:55:28
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answer #4
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answered by Anonymous
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