I had brain surgery for a menengioma in the brain stem and did good. I had what was supposed to be temporary facial paralysis and then has turned into 15 years of paralysis. I don't feel touch but I have chronic facial pain. I have gone through all kinds of treatments but nothing has helped but narcotic pain meds. About 2 years ago I developed horrible burning in my mouth, cheek, tongue, roof of my mouth, and lips-- all on the paralysed side of my face. I have seen several neurologist and they think it might be due to radiation treament that I had 6 months after the brain surgery. I have to keep up with the pain meds to get some relief and after so many years the meds don't work very well. I take Baclofen, Neurotin too. Are ther any new treatments that might help me or have you seen this condition before? I am desperate for some help. Almost at one point I felt suicidal because of the pain and I was also put into the same category as recreational drug addicts. Because the medical field has rarely heard of this problem, I am treated like someone just wanting pain meds to get high. I found a new pain management doctor who is treating with deep respect and say that it is people like me who make her happy that she has the job she does. She is willing to help me but still doesn't have an cure for me. Do you have any feedback on my problem?? Dr. Robert Spetzler in Phoenix performed my 15 hour surgery on the menengioma in November of 1994.
posted on
Thu, 13 Mar 2014