TNNME: TRIGEMINAL NEURALGIA and ME
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  • Intl TN Awareness Petition
  • Trigeminal Neuralgia Awareness
    • TN/FP Resources >
      • TN: Working Together >
        • United States Resources
        • Ireland Resources
        • United Kingdom Resources
        • Australia & New Zealand Resources
        • Netherlands Resources
        • Finland Resources
        • Canada Resources
        • Brazil Resources
        • Why Does Pain Get Worse When a Storm Is Coming?
        • TN & Social Security Disability Help
  • International TN & FP Ribbon
    • Countdown Clock
    • Intl TN Awareness Videos
    • Intl TN Magazine
    • Poems by Intl TNers
    • Cherokee Hat Trick by Brian Whitaker
    • Intl Arts 4 a CURE
    • Photos of TN & Facial Pains
    • Author Brian Whitaker: Going Down Short Story >
      • The Pharmacy by Brian Whitaker
      • Gabapentin
      • Shakespeare My TN Buddy
      • Having a Good Time-TN Version
      • 1126 Tomcat Way Full GM Edit
      • Author Brian Whitaker: The Rat
      • There's an elephant on my face
      • TN The Pain Awakens
  • TN Awareness Products
  • What is Trigeminal Neuralgia?
    • Facial Pains Disorders
    • Battle Scars of TN and FP
    • Research 4 our CURE
    • Stop It Coffee For A Cause
  • 2022 Light Up Teal 4TN
  • 2021 Light Up Teal 4 TN
  • Our 2021 TN Day
  • 2020 Light Up Teal Trigeminal Neuralgia
    • Lighting Request Info
    • Trigeminal Neuralgia: Why Light Up Teal?
    • Our 2019 TN Awareness Day
    • 2018 Intl Light Up Teal
    • Our 2018 TN Awareness Day >
      • 2017 Light Up Teal 4 TN & FP
      • 2016 Light Up Teal 4 TN
      • 2016 Oct 7 Intl TN Day Events
      • 2016 Intl TN Awareness Day Events
      • 2015 Light Up Teal
      • 2015 TN Day Photos
      • 2014 Light Up Teal
      • Oct 7th 2014 Intl TN Day Photo >
        • 2013 Light Up Teal
        • Betsy Alexander's TN Story
        • Artist Tara Shuey Story
        • Maureen Stone Story
        • Artist Tara: Loved one’s perspectives…………
        • Miriam Fraser's TN Journey
        • Honoring the Taken
        • Rebecca Thorpe Story
        • Nikki Samuel Story
        • Holley Pesina TN Story
        • Susan Wiffill Story
        • Daniel R. "Bob" Snodgrass
        • Frank Skoviera Story
        • Kristina Pelly-Filocamo Story
        • Lagi Leau Story
        • Karen Brigham Story
        • Jennifer Rodgers Houghton Story
        • Dawn Raye Winner
        • Ron Blair Story
      • 2016 Race to Save Face
      • Children & Teens with TN
  • TN: Media Center
    • TN Proclamations
    • Open Letter: Dentist and Oral Surgeons
    • TN & the ER ROOM
    • Open Letter: ER DRs
    • AN OPEN LETTER TO DOCTORS
  • To WHO
    • Hello WHO >
      • TNNME (Toni) Story
      • It's ME on TNnME 10/7/2017
      • 9/21/2016 TNnME Press Release
      • Living in the moment
      • My TN Symptoms
      • Hormones with Trigeminal Neuralgia
      • Trigeminal Neuralgia and Me
      • Cluster Headache Links
      • (CH) Abortive & Preventive treatments
      • Cluster Headache
      • Contact Form
  • Be Strong
TNNME: TRIGEMINAL NEURALGIA and ME
Kristina Pelly-Filocamo sharing her TN Story


​Kristina Pelly-Filocamo Story

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"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."
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