I am a 52y.o. male that was diagnosed in July 2000 w/ neurofibromatosis. The diagnosis is a result of an MRI done at that time. The MRI indicated several fibromas in the t-4 to t-8 intercostal area that range from very small (millimeter) to 1" to 2" in size and appear to be no threat to my spine. The discovery came after the pain in my back was becoming very severe and unbearable. There is no history of neurofibromatosis in my family, I have no cafe au lait spots of other symptoms usually associated with NF. To combat the pain I have been prescribed different medicines. I started on otc medicines which did not work. My family doctor had me try tegretol with which I experienced many side effects. Next was vicadin. I then visited a pain mangement doctor that took me off the vicadin because of concerns with side effects concerning the liver. I am now taking methadone which works well but I can't stay awake. Surgery has been mentioned but only as a last reort. Stated the surgery could be painful with a long recovery.The doctors stated the surgery could ending up with more harm than good. Stated the tumors could grow back and nerves regenerate. Also a TENS unit was tried but w/o success. I have an epidural nerve block scheduled in a couple of weeks which I am looking forward to.
My question or concern is I have not been able to find any info on pain mamnagement associated with neurofibromas. Does the coarse of action my doctor have prescribed sound reasonable and do the fibromas have a history of regenerating or growing larger?
Sorry to hear about your neurofibromatosis (NF-1?) Most of the time, the neurofibromas are very slow growing and do not cause problems. However, when they are in a sensitive area, such as you are experiencing they can be a problem. When they reach a stage of compromising function or tolerability surgery can be done (alot depends on the location and I would agree with the advice you have received). There is no concensus on pain medication for fibromas that I know of. Trial and error and the response of the individual are usually what is tried. You are travelling down a road that many have gone before and the best people are usually the pain management folks. I would read some of the other postings on this site as they can be very informative. I hope that the correct medications can be found.
The doctors here are terrific and I hope you get some good info. But for pain, you could also try posting a question at www.paindoc.com or perhaps it is www.thepaindoc.com. They are very knowledgeable about pain, including neurological.
I couldn't help but notice this posting. It is right down my alley. NF and I go way back to my very beginning (without my knowledge until later) and the road is a tough one. Pain is never easy to handle, especially in the sensitive areas. Mine happens to be tumor networks within and without my cranium. The baddest boy is located in my deep cavernous sinus (mid-brain), and the havoc it wreaks is undescribable. But, enough about me... this concerns you, Steve.
Pain therapists can work wonders. The feeling you have after you leave is like 7th Heaven. In the realm of chronic pain, the brain can be your worst enemy. It dwells. And dwells. And dwells on it. Why? Because it's up-front. Everything else in life takes a back seat and most of our important issues end up in the very back of the bus. We can't seem to get past the fact that this pain... this pain... this pain is driving us crazy. It's important to sit and start talking. When you start talking, issues change. You talk about everything and most of it doesn't even concern your pain at all! You leave with a healthy smile on your face thinking about going and buying that new car that's making you drool, getting new furniture like you planned, seeing that movie you've been wanting to see, taking your grandbaby over to the park with the monkey bars (that you won't play on, but he/she will), and just blowing off steam because you forgot how much fire you still have in your furnace. Try it, Steve. It's worth every hour you put into it.
Now... pain meds. MS-Contin. You could replace the Methadone with it. You won't have, what I call, "the morpheus nod" quite as bad. Neurontin. The pain drug with the least side effect(s). It can be blown out to 3600mgs per day if necessary and not make you feel like a zombie with shoes on. Mexiletine. Yeah, I know it's hard to say (mex-il-a-teen), one of the "caines" but it numbs from within. These drugs are just suggestions from one NFer to another. I'm not a physician, just one who see's pain from the pain side. If you still feel like nodding out, you could use a little ritalin (methylphenidate) to spruce you up. It works well for keeping you focused, but it is addictive... and so is the MS-Contin, but in order to qwell pain it may be necessary for quality of life. In the end, it's your decision. Just make the suggestions to your doc and get opinions.
Doc RPS? I'm still around, just not as much as before. I'm still thankful for your support through that craniotomy I had. My eye is still giving me fits and I may lose it altogether. Life goes on. You have a good one, Doc.
Steve? You have some major stuff on your mind. Please get a pain therapist. NF isn't fun. If you want to email me... ***@****.
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