Randi Gordon It's Really Brain Surgery

First post: Mar 17, 2017 Latest post: Apr 3, 2017
 Five years ago I went through a three or four month period of time where I would have excruciating  pain on the left side of my face. After visiting many doctors, apparently not the right ones, it went into remission. Four months ago it started again. The pain is a level 9 or 10, where I am screaming  and crying in pain. It feels like someone has the left side of my face in a vice and they are stabbing it with an ice pick. The pain starts behind my ear and shoots down into the side of my throat and the back of my tongue.    I diagnosed myself, after a lot of research, with glossopharyngeal neuralgia. When I came home from Hawaii, I went to the ER twice, saw an ENT, a neurologist, and finally a  Neurosurgeon. Until the MRA  proved my diagnosis correct, no doctor wanted to even acknowledge what I thought my problem was because most of them had never even heard of  it. This disorder only occurs in .07% of 100,000 people. I am on almost 4000 mg  of anti-seizure medicine a day, which helps with nerve pain, so the pain has subsided for the most part but I have a lot of side effects from the medicine. If I don't have the surgery now, it will start to happen more often with greater  intensity, which I can't even fathom.   It will be a long road to recovery because not only is the brain surgery  a lot to recover from but with anti-seizure medicine you cannot come off of it that quickly or you could have seizures. I am thankful that it will not be a lifelong disorder   I am just anxious to get back to my regular, fun life and not have a life road by medication and its side effects. 

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