After waiting and getting excited to see a neurosurgeon about my prospects of brain surgery, I finally got in to see him. Knowing that any brain surgery for trigeminal neuralgia would be harder since it's atypical, meaning its on both sides. But I was excited because often the surgery is closest there is to a cure. Going in to the appointment I was hopeful that I had finally reached the light at the end of the tunnel.
When I went into the office the Dr. reminded me, very much of Dr House, and I liked him immediately. After conducting some in office exams he determined, "you don't have Trigeminal Neuralgia". I was shocked, he continued, "the Dr's that have been treating you, are trying all these gun slinging approaches, throwing all these drugs at it, experimental treatments at it, but they're not investigating it. And the drugs aren't working... I'm sorry but we need a proper diagnoses before we can look at surgery." It was very confusing and disorienting to go in expecting to be prepared for brain surgery to be reviewing options and then the tables were flipped. And I was to leave knowing that we needed to go back to square one and re-diagnose. I went in to get a cure for what I thought I had and I left not knowing anything, but that I am in a lot of pain and no one knows why.
The neurosurgeon I saw was the top in BC, I paid out of pocket to see him at his private clinic, so I would not have to wait the three years. My case was not suppose to puzzle him. Luckily he could refer me to the specialist he goes to for help, when things puzzle him. He said that if she couldn't help there was an expert in germany, that might know what kind of genetic neurological condition this is. Learning that my case was more rare and complex than average was scary.
I asked what he thought this might be? He said, that most likely my trigeminal disorder is also a very complicated neuropathy instead of just a neuralgia. And, it's grown to affect all of my nerves, not just the trigeminal. Which is why I have the neuropathic pain and now peripheral neuropathy symptoms.
Luckily, he was able to refer me to a genetic neurologist for a diagnosis, and investigation. As he said that the pain is definitely a trigeminal neuropathic problem, probably a rare one, but it puzzled him as to what type. Its also degenerative as from 2015 it wasn't there, and now 2017 its past what medications can help. Also strange that the numbness and tingling pain throughout my hands and feet has grown worse.
So I left with no answers, other than that surgery would have to wait as there needs to be a diagnosis pointing to the problem.