Kristina Pelly-Filocamo sharing her TN Story
Kristina Pelly-Filocamo Story
"I was diagnosed with Trigeminal Neuralgia on the left side of my face in January 2015. My life was a whirlwind...I have always thought that I had bad teeth; the sensitivity on the left side of my mouth was unreal. After two root canals, there was no hope of any pain subsiding. I ended up going to my family doctor who diagnosed me, he asked me several questions and told me that he just saved me a lot of time and money because he has Trigeminal Neuralgia and that I am a "classic case."
So I didn't really understand what it was...at the time I was running my company and just trying to get by every day. My MRI confirmed that it was indeed TN, and I was sent to a neurologist. This neurologist, I was not a fan of at all. He was totally not empathetic at all. After nearly having a nervous breakdown on Tegretol and sleeping my days away (I was extremely allergic to Tegretol) I tried Vimpat, Gabapentin, and then finished off with Lyrica. After telling my neurologist that I refused to live this way, and also spending weekly trips in the ER due to the ice picking attacks on my brain, I explained that I wanted to have MVD surgery.
The neurologist reluctantly sent me to a neurosurgeon, Dr. Seiff. Seiff agreed to operate on me and he explained that not only was I the youngest patient (28 years old) that he has ever operated on, that he has also not seen a more clear case of Trigeminal Neuralgia. We scheduled surgery for a few weeks out. I got my affairs in order...literally, made a will, put my business in a trust, etc. I couldn’t believe at my age that I thought to myself that I might not make it through the surgery...my anxiety was high.
The surgery was scheduled for June 26, 2015. I vaguely remember the details of surgery, but I know for a fact that I couldn't walk, couldn’t hear, and could barely see. Not to mention, I had a spinal drain in my back due to a CSF leak. They released me after a week, but I could barely walk and felt terrible. Three days later, I was readmitted into the hospital, and had another spinal drain put it in, the doctors told me that I was just a few days away from contracting Spinal Meningitis. I was SO sick! Vomiting, had no balance, could not walk. What a mess! It took another week, but they took the drain out and I was feeling a lot better. Post op, it was four months of recovery.
To this day, I am still in recovery. Brain Surgery did give me a new handle on life- Life is too short to be miserable and do things that you do not want to do. With that, I sold my company because it was no longer providing me with happiness.
And presently, I am attending nursing school...because of my experience with TN and MVD I feel that I could truly empathize and help patients suffering from neurological disorders.
My advice to those suffering is to ALWAYS get a second opinion, and just because TN is not shown on the MRI, doesn't mean that surgery is not the answer."