TNNME: TRIGEMINAL NEURALGIA and ME
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  • Intl TN Awareness Petition
  • Trigeminal Neuralgia Awareness
    • TN/FP Resources >
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        • United States Resources
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        • 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
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  • TN: Media Center
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    • Open Letter: Dentist and Oral Surgeons
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    • Open Letter: ER DRs
    • AN OPEN LETTER TO DOCTORS
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    • Hello WHO >
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      • 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
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TNNME: TRIGEMINAL NEURALGIA and ME

Holley Pesina Sharing her TN Story


​Holley Pesina TN Story

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I'm a 29yr. old married mother of four originally from Amarillo, TX. I'm also a Registered Nurse. I suffered a head injury when I was 6yrs. old. My left side of my head was crushed by being run over by a car. As a result I've had headaches since.
 
I've suffered from Trigeminal Neuralgia and Hemi facial Spasm since I was 16yrs. old. I went misdiagnosed for 6 yrs. It began with me having severe migraines that started on the left side of my head and radiated down to my left eye ball. It was an excruciating pain!

It felt like something stabbing me in my head but it kept getting worse and worse. Then I started getting these pains behind my left ear and my lower face would spasm up which looked like drooping but is a painful spasm. It really exacerbated when I went to school and my speech slurred and I was hurting and getting sharp pain in my eye and my face was all spasmed.

My mother took me to the ER and I was diagnosed with complex migraines after tests and a hospital stay.  With my left side of my face spasmed which looks like drooping but it's a painful spasm and my face hurting I really don't understand why no one diagnosed me.

​ I kept telling them that my face hurts not just my head! In and out of the ER throughout the years with severe pain and being labeled with it being psychosomatic or drug seeking which I couldn't wrap my head around it because my face was in spasm and you could see it!???

No one in Amarillo could ever find anything on MRIs. After going through nursing school I actually diagnosed myself after researching facial nerve disorders and my symptoms. I thought to myself this is what I have. I was admitted from work one day in severe pain and I asked the Dr. to prescribe me tegretol and he left and never did so I laid in that hospital bed crying in pain because I had no answer to get this pain to stop so when he rounded again and I demanded to be sent somewhere that was more familiar with Facial pain disorders which led me to Dallas, TX.

Upon making it to Dallas I was in the neurologist office 30mins and I finally got the diagnosis of TN and Hemi facial spasm. I cried because I finally had an answer to get rid of this nightmare I had been living with for long 6 yrs. It was found that I needed a MVD of my 5th and 7th cranial nerves.

After I went home to Amarillo and waited for my surgery things went from bad to worse! I could no longer work or care for my children because of the high doses of meds and pain. I could go from my bed to a rocking chair in my living room so when it became time for my surgery I was so excited! I went to register at the hospital and to my shock the lady told me my insurance was denying my surgery.

I was livid! So upset.....and I was in so much pain how could I even call and talk to all these people with my insurance to see what was going on. So my sister stepped in. I remember her telling me “don’t worry Holley; we're not leaving this hospital till you get this surgery!"

It turned out they had denied it because it was considered "experimental" or not necessary. My sister argued with them that I was on 8 different meds and couldn't even function or care for my kids. My neurosurgeon ended up speaking with them and sending some info they needed and got my much needed MVD if my 7th and 5th cranial nerves.

After my surgery I woke up seeing two of everything. I got nauseated every time I tried to get up. The surgeon said he had a lot of trouble getting all the vessels away from the nerves some damage may have been done to my adjacent cranial nerves.

The pain subsided a lot but returned a few months later. So I underwent gamma knife which helped for a few months but I developed vertigo as an adverse effect. Pain now feels constantly dull and achy like I've been punched in the face with periods of the stabbing pain that seems to last longer. Hours actually. Pain goes up in my teeth and real bad in my eye.

I've undergone a couple nerve blocks and one attempted laser rhizotomy and the Dr. was unable to get where he needed because of my anatomy and as a result of him trying so hard my face swelled up huge and I had a black eye. Most recent procedure I went back to Dallas to have a Balloon Compression rhizotomy. Very painful afterwards and I'm back in pain daily.

Now looking for anything to help with pain. It feels like it will be with me forever. Only thing that keeps me here is my family. I've gone 13yrs. with this nightmare. I call it my dark passenger. I'm not going to give up after going this long. The Lord is my strength and I look to him when I'm weak.

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