My diagnosis of Trigeminal Neuralgia

The story of Audra

A day I will Never forget is February 3, 2012- it changed my life forever! That day I had a ‘simple’ surgery – the small mesh they put around the neck of my bladder was put in and that very day- it went so bad! I could not urinate and it went from bad to so much worse. Unbeknownst to me, it was made out of a toxic material and I started getting infection after infection starting with my urinary tract and working its way all the way up to my head. I actually got cellulitis in my face with pus running out of my eye. Sadly, the infection also hit my tonsils/adenoids and I had to have them removed because they were so infected also. My issues continued and for a year and a half, my face and head hurt so bad that I was in my chair with ice around my head every day and for the most part, all day. I felt no pain while I slept but the moment I woke, the pain started again. I was in and out of the hospital and urgent care constantly because of such severe pain and my blood pressure rising over 200 each time. My head felt like it was being squished – like in a vice like grip. I explained it every time I had to go in. One of the last time’s I went in because I felt my body shutting down. I knew I was going to die and I told the hospital when I went in. They were so concerned because of my blood pressure being so high. Of all my trips to the hospitals, I never got any answers as to what was happening to me until this day! It took hours to calm my body and calm my pain but this day I was blessed with an answer to what they thought I had – Trigeminal Neuralgia! We had Never heard of it so there was no clue about what it was until my daughter looked it up and every symptom it described, was everything that had been happening to me! Of course I’m told it was a rare disease and we laugh because from then till now – if it’s rare- it’s Murphy’s law that I will get it. I was actually happy having a name to what had been going on with me. It literally took my life away. I had the MVD done and 6 months later I needed Gamma Knife because the surgery helped it just 50%. I have nerve damage on my right side of my head and face but I’m ok with that. I’ve only had a few small attacks and I was told the surgery should last 10 to 15 years. I had the MVD January 2013. 9 years have gone by and I have had so many other major issues and surgeries but my Trigeminal was the worst of my issues yet. I know that there are various degrees of pain and symptoms but I do know I sadly ended up with it being so horrific and for so long before a beautiful doctor took the time to figure out what was really happening to me! My heart goes out to all who also are afflicted with this horrible disease but thankfully there are procedures and surgeries now that are very effective and definitely finding a great Neurologist and Neurosurgeon is everything!!!