A quick update—nothing “scary” on my scans which is good cause no tumors or aneurysms—My heart dropped initially cause I was thinking, “here we go again with no answers” but Dr White assured me quickly with my history that there are about 20 options ranging from “most abortive treatments to simple medications” to try and it would depend on me. First, diagnostically it’s most simply essentially a type of trigeminal neuralgia but he said that’s actually to simplistic a diagnosis with my history. Essentially my neurological system is sending electrical signals that are misinterpreted by my brain and cause a pain response. This could explain my right ear having sharp stabbing pain off and on frequently to the point 2 years ago my ENT did a CT scan to see if my cholesteatoma had come back but found nothing so I’ve just dealt with it. The potential solution we are going to try is a nice a month injectable medication that blocks the specific neurological pain receptors and because it’s so specific the ONLY side effect possible is some nausea—which I live with all the time anyway so I’m hopeful and excited that I might have a way to not have pain I’ve apparently lived with a lot longer than I realized. In the brief research I did on Trigeminal Neuralgia they said it has been called the “suicide disease” and is known as the most painful thing to happen in medicine. So yay me! But in all seriousness, I almost cried tears of relief in his office that there might actually be a fix this time.
My pharmacy is out of stock so I’m waiting for a call for them to see which pharmacy in town has it so I can start today. He said it won’t be immediate relief but thinks it could really help and I follow up in 3 months…which is already June people! Time is flying!
Gotta run but wanted to update in one place as so many are asking what happened! Love you all dearly!
In His Mighty Grip,
Rachelle
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