MY Story
bilateral trigeminal neuralgia
My name is Sheena Sharapata and I was diagnosed as migraines with aura for 18 years from 8 concussions while playing competitive soccer. I had to forgo an athletic college scholarship offer in high school due to an array of head pain symptoms starting at age 14 and at age 32 when shocks and stabs started in my ear, eye and temple, I sought medical attention. My doctor advised on a new MRI with and without contrast in the hope to get a proper diagnosis.
While searching for answers, my MRI was clear of tumors, MS, white matter and aneurisms. I had a family member who was diagnosed 10 years ago with Trigeminal Neuralgia, also known as the suicide disease, but with textbook symptoms. We decided to rule out this neurological condition. My imaging was originally read negative by the Radiologist, but then it came back that I had a major artery touching/compressing my 5th cranial trigeminal nerve and did in fact have Trigeminal Neuralgia. I rarely had the textbook symptoms of teeth pain and a sensitive face to touch.
I continued to search for answers and went for a consultation with a Neurosurgeon at a top Hospital after explaining I had a family member that was diagnosed with TN 10 years ago. The Fiesta MRI with and without contrast confirmed the diagnosis and this imaging allowed a closer look with higher resolution slices to see additional veins, blood vessels or arteries that could be potentially compressing the cranial nerve.
I have had two successful MVD Surgeries for Bilateral Trigeminal Neuralgia, known as the Microvascular Decompression Surgery, where the medical team drills a small hole in the skull behind the ear then place Teflon spacers between the compressions of the areas touching. My right side MVD surgery was completed in October 2019 with Dr. Lim where a major artery was touching my cranial nerve in two locations that was decompressed with Teflon. Then, 6 months later, my left side MVD surgery was completed on March 2020 with Dr. Lim where a vein was touching my cranial nerve in two locations that was decompressed with Teflon.
My symptoms were not typical and now I continue to share my symptoms, journey and successful surgeries throughout social media to reach and help many find validation including athletes, veterans and first responders. I had intense pressure in my head like it was constantly in a vice, pressure in my eyes so bad it felt like they were going to pop out, numb hand, muscle knots everywhere in back and shoulder blades, blurred vision, strained vision with floaters, plugged ear with random ringing, anxiety, severe emotional ups and downs, balance issues, electric shocks in my eye, ear and temple, stabbing icepick pain in my ear and pulsating in my temple.
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Dr. Lim's Profile: https://profiles.stanford.edu/238246

“God often uses our deepest pain as the launching pad of our greatest calling.”



My Story
Bilateral occipital
Neuralgia
After my two successful MVD surgeries for bilateral Trigeminal Neuralgia, I noticed I would still get flares of a knife like stab in the back of my head at the base of the skull with a feeling of a rubber band being pulled upwards so tight it was about to snap ending with an icepick pain straight into my sinuses. I would also get shocks or stabs in the back of my eye, nerve pain behind my ear and my vision would be blurred at times, not fully focused.
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I went back into the local doctors in Dallas and was offically diagnosed with bilateral Occipital Neuralgia (not a cranial nerve). I started doing the steroid nerve blocks as I wanted some time off from surgery. For three years, I would get nerve blocks in my lesser occipital nerve, greater occipital nerve and C2-C5 on both sides under guided ultra sound x-ray under anesthaia for 15-20 minutes.
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In November of 2024, my body decided it no longer liked the steroids and I started to get heart palpitations and a tight chest. I knew the blocks were just bandaids and that it was finally time for surgery. I always had the feeling from above that I needed three surgeries when I had my first original diagnosis of TN.
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On November 14th, we flew to Stanford Health Care and I had the Occipital Neuralgia Nerve Decompression Surgery with Dr. Wilson on November 15th. He was able to address both the Greater Occipital Nerves with this one cut in the back of my head/neck. When the original incision is made, the third occipital nerves are cut in the process. The Lesser Occipital Nerves are not addressed during this surgery and I didn't have issues there.
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I finally got my confirmation when I woke up from the surgery. Dr. Wilson found an artery really wrapped around my left Greater Occipital Nerve that was able to be tied off and removed. Then, he found scar tissue and a lot of scarring likely from trauma (my 8 concussions from soccer) pinching the right Greater Occipital Nerve where I always had more intense flares. Dr. Wilson said both nerves looked great at the end of the surgery.
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When I woke up, I had better HD vision in both of my eyes and no longer had any of the nerve pain. Stitches were dissolvable. We were able to fly back to Dallas, TX the next day and I was back at work on that Monday. Healing as been going beautifully and full heal time inside can be 6-9 months, but I am thankful for immediate results.
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Occipital Neuralgia can be caused from scar tissue on the nerves, an artery that can be tied off and removed, an artery that is essential that can't be removed so it is moved off the nerve or the fascia from the muscle can be compressing it.
Thankful to keep learning and to be able to spread awareness and share that many of us have multiple neuralgias and there is a community for support with success here to bring validation. Three weeks post op, I got a tattoo with all three surgery dates to remind myself to let go and let God.
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Dr. Wilson's Profile: https://med.stanford.edu/profiles/182141
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FEATURED PODCASTS
Sheena shares her story on a variety of podcasts below to increase impact and awareness.
Hometown Heroes Podcast with Rick Irving and Mary Staffeld November 5th, 2024
Sons of the Flag RADIO | October 17th, 2023