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Old 03-17-2006, 08:03 AM   #1
Senior Member
Join Date: Jan 2006
Location: east, VA. USA
Posts: 227
enie HB User
Question Neuralgia causing ear pain ?

After 40 years of agony, I was finally diagnosed in 2001. It took a few months of evaluation for the Neurologist to determine the cause of my terrible earaches and mini black out spells, but finally his diagnosis was Neuralgia. He said that it was not essentially Trigeminal, but that it was either Glossopharyngeal or Geniculate Neuralgia. He wasn’t quite sure which one, but would pull my old charts out of the archives and we’d talk about what could be done on the next visit. He also made me an appointment with an Electrophysiologist.
I looked it up on the internet when I got home. They were almost identical to what I had been going through most of my life, and it seemed that both types fit my long standing problems. I didn’t really care which one. FINALLY my torture had a name. No cure, but a diagnosis meant a lot. Somehow, by knowing what was happening to me, it finally made it bearable.
On my next visit we discussed meds, plus he told me that it had probably been my problem all along but was over looked because it was so unusual.

My problem: I was assigned a new Neurologist because mine moved. And now the new Doc can’t seem to see anything in my chart about the diagnosis of Geniculate Neuralgia or Glossopharyngeal Neuralgia and sent me to a neurosurgeon. After a catscan to see if I had a tumor, the Neurosurgeon said; except for a lot of old scaring he didn’t see anything. He asked why I was seeing a Neurosurgeon, and I told him about the deep pain in my left ear being either Geniculate or Glossopharyngeal Neuralgia. He said he never heard of such a thing, Trigeminal Neuralgia is Trigeminal Neuralgia and that I needed to go to ENT for an earache. I said that ENT sent me to Neurology………… He walked out.
I felt like square one.

Question: Is Trigeminal Neuralgia the only Neuralgia? Is having Geniculate or Glossopharyngeal Neuralgia really so rare that even neurologists don’t recognize it? I can’t find my old Doc to find out why it is not in the chart records. All I could think of is that My first Neurologist was only guessing and didn’t have the proof, so he left it off his notes…….
How do you prove that you have the condition?

An extra question: After open heart surgery in 2003 I developed Trigeminal Neuralgia also.
Is that common?


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