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Posted by ccf neuro M.D.* on November 07, 1997 at 23:14:43:
In Reply to: Neuromas in Knee after Multiple Surgeries posted by PSGore on October 11, 1997 at 01:47:21:
I have what has been diagnosed as many neuromas in my rt knee after multiple surgeries including a total knee replacement last year at age 41.Apparently I have been "collecting" more neuromas every time a surgeon opened my knee to try to find the problem. My symptoms are a constant intense burning and it is like walking on a razor blade from the middle of my thigh down into the middle of my shin.The original injury was torn cartilage, bone trauma (medial femur condyle) and possible nerve damage on the medial side which happened during a basketball game when I was 24. For a while (this year) I was using neurontin which helped somewhat but I had side effects that required that I discontinue its use. Constant injections of local and long acting anethesia no longer help much. Physicians are now telling me that any further surgeries to silence the neuromas would probably cause additional neuromas. I have basically been crippled by this for the last 17 years but keep hoping that an answer comes along with medical research. I have found various articles about resecting the nerves or capping the nerve ends.This story could get incredibly long so here is the question: I'm not crazy about any additional surgeries, however, this just seems too dumb that nothing can be done about this especially after seeing articles dating back to the 60's about this subject.Is there a way to identify which nerves are going nuts (MRI, CAT scan, Dye tests)? Would the Gamma Knife or some other new technology be useful with this problem.I live about 35 miles northwest of Milwaukee, WI and have seen about 10-15 physicians over the course of this medical adventure but no one in this area that I have seen has any ideas about my mostly useless leg, although they all are interested enough to want to open it back up all the time. Any suggestions? and if you have any can they be done if I now have an artificial knee. Thanks. PSG
Your situation sounds like a very difficult one. Your neuromas are likely what we call "traumatic neuromas", the trauma being your basketball injury and the subsequent surgeries on your knee. These neuromas form when the nerve endings that have been damaged or actually cut in half as occurs when making a surgical incision attempt to grow back together, but cannot do so because scar tissue or something else is in their way. This results in massive oversprouting of the nerve fibers in random directions as they try to (unsuccessfully) navigate their way around the road block so to speak. These excess nerve endings eventually ball up along with nearby scar tissue like spaghetti in a cement block, and thus the "tumor" or neuroma is formed. Note that while these are "tumors" (i.e. masses or lumps), they are not cancerous in any way.
I do not blame you for being leary of any additional surgeries, since each such surgery would be yet another trauma for the knee, and likely result in new neuromas and possibly even more of them and the scar tissue.
Drugs used to treat pain generated by abnormal hypersensitive nerve endings like those in the neuromas include anticonvulsant drugs like Dilantin (phenytoin), Tegretol (carbamezapine), and Neurontin (gabapentin), and tricyclic antidepressant drugs, in much lower doses than those used to treat depression. Some examples of these drugs include Elavil (amitryptiline), Pamelor (nortryptiline), desipramine, imipramine, and doxepin. All of these drugs have many potential side effects, but most people can find at least one that they can tolerate and get benefit from.
If you have not seen a pain therapy specialist (certain neurologists, psychiatrists, and anesthesiologists do this for a living), I would STRONGLY suggest that you do, as they may have additional blocks, injections, and pain management programs that may improve your level of functioning. You must be very motivated in order for such a program to succeed, however, and it is not likely that there will be any simple or easy fix to a problem such as yours. If you live in Wisconsin, you are reasonably close to the Mayo Clinic, which is where I would suggest you go. Of course, we would also be willing to see you here at the Cleveland Clinic if Cleveland is more practical for you. Our number is 1-800-223-2273; ask the operator to connect you to the pain management unit, and they could assist in arranging the appropriate evaluations and consultations for you as a single day visit.
Information provided in the forum is intended for general medical informational purposes only. Actual treatment of your specific medical condition should be strictly in conjunction with your treating physicians. We hope you find the information helpful.
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