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Jan 13, 2017 · Trigeminal Neuralgia* in Brain & Nervous System

Thanks Colleen. Where can I find the story about Amy and the use of the stimulator?

Jan 13, 2017 · Trigeminal Neuralgia* in Brain & Nervous System

Hi Colleen. I’m not sure where to post this to hopefully get some replies?
Hi. My husband had trigeminal neuralgia since 2007. Over the years he has tried many medication but the one that helped “the most” was Trileptal, an anti seizure medication. He started to have a problem with low sodium levels (which can cause stroke or seizures), so in 2014 he had a Gamma Knife procedure. No relief. Again he tried it in 2015 with no relief. So, he had the microvascular decompression surgery. The surgery went well but right away had a cerebral spinal leak that was mistreated. He then got bacterial spinal meningitis and was on antibiotics for three weeks. The CSF started up again so he had to go for another surgery to repair the dura leak so the fluid would stop leaking from his brain! Now for the last eight months he has been dealing with something we think is called anesthesia dolorosa which is numbness and tingling in the whole left side (the side of the problems) which is constant. His eyeball is completely numb and he is miserable. The Dr’s say there is no treatment. He is taking the Trileptal again (not helping much) but is having the low sodium issue again. He stated that the pain is like after leaving the dentist with numb side of your face and it starts to wake up but never completely wakes up. So, he’s dealing with constant numbness and tingling. He things this just might be worse than the intermittent trigeminal pain. Does anyone know of any treatment for anesthesia dolorosa?? Thank you.