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glossopharyngeal neuralgia

JT jt at jt.net
Wed Oct 30 09:25:26 EST 2002

First off, please excuse me if this is off-topic but I am desperate for feedback and you seem like a smart bunch of folks. :) I just returned from a second-opinion neurosurgeon appointment. 2 for 2 say I have glossopharyngeal neuralgia with atypical symptoms. In my case the pain seems to originate from the back of throat, left side, into my inner ear and when really bad, into my face (similar to TN). I have had this for ten years. It comes and goes. Pain visits for a few months, then remits a few weeks, then returns. I am a 42 y/o male in otherwise good health and my MRI shows no tumors or lesions. The surgeon did point out what he sees as an anomaly in the position of the vessel near the glossopharyngeal nerve. We discussed vascular decompression procedures. Frankly, they scare me. It's brain surgery. When the pain is in remission I can hardly remember it, perhaps because I am so relieved to have it gone. But when it's going full bore, it is exhausting and sometimes debilitating. They have tried pretty much all of the meds on me that are used for this and I am either allergic to them or they are ineffective. I get relief from Celebrex but in the past year my dosage has had to be increased from 200mg, to 400 mgs and now 600 mgs. I am worried about what that drug may be doing to me, long term. My problem is deciding whether or not to have the microvascular decompression surgery. I thought I was decided to go forward with the surgery, but now I am having second thoughts because they cannot say for certain what the issue is until they get in there. Any input, advice or shared experiences with this condition would be would be helpful. My email is vercing at starband.net. Thanks, JB

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