Help Stacey Barrientos beat Trigeminal Neuralgia
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So here we are Day 413 with Trigeminal Neuralgia (TN), aka “the suicide disease.” Stacey likes to do things BIG so she went ahead and threw in Geniculate & Occipital Neuralgia along the way as well. She had no injury/accident and has been cleared of tumor and illness which generally is the reason for TN. Stacey is 45, decades below the average age of patients with TN. There is a genetic pathology associated to Neurologic conditions and we have traced back to some Neurological diseases within the family.
As many of you know, Stacey was very healthy and in the gym 4-5 days a week. When she wasn’t in the gym she was running a trail, track, park or our subdivision.
She was an avid runner; having run HUNDREDS of races from a local 1 mile race to 100+ miles. Stacey completed a 102 mile race in Joplin, MO in December 2018, owning a current state record. Her next 2 ultra’s were personal best bringing in over 50 miles in under 12 hours proving 2019 was going to be a solid race year.
She then ran a 24 hr race completing 86 miles with a groin injury on March 15, 2019. As with most endurance events she had the usual post race sickness. She healed up within days. March 24th she thought she had a bad sinus infection and began treatment. Sadly, that wasn’t the case and by March 28 at 2am all hell broke loose. She woke up in excruciating pain, holding onto her face, crying and pacing around the room. In the years that we’ve been together I had only seen her cry MAYBE a handful of times, until the week this all started... then it became a daily occurrence.
Early in her treatment she was still battling the pain and competing in 12 and 24 hour races. The sicker she got, the more these conditions took over everything changed. To say that this diagnosis has changed her life, drastically would be an understatement. She no longer has energy to go to the gym or run. She works at home and struggles to make it through the day. She can no longer eat normally and remains on a strict diet. In the month of October alone she lost roughly 30lbs due to severe food intolerances as a result from medication damage. She battles daily trying to stay at an acceptable weight to be surgical ready.
TN and GN are rare disorders with no cure. When a patient cannot be treated with drugs, pain is managed with Brain Surgery.
All drugs, procedures and treatments have failed Stacey. The extent of surgery she needs can only be done by a couple properly trained Neurosurgeons due to the rarity of GN. We are going to the best, Dr Mark Linskey at UC Irvine in California.
Her original surgery date was 04/02, however COVID-19 stepped in and shut down the majority of the country. Her surgery was called off just days before we were to travel out west. She was placed at the top of the list once the hospital reopened for surgeries. They called us a few weeks ago with all pre-op appointments and a surgery date of May 28th. She will undergo a left side Microvascular Decompression (MVD), brain surgery, 4 pack on cranial nerves 5, 7, 9 & 10.
From the 5 day medical consultation trip in January, this 3 week surgical trip, along with out of pocket medical treatment from this past year, it has added up to over $15,000 out of pocket. She will have to return for another 3-week trip for brain surgery on her right side once healed enough from her upcoming surgery.
This is difficult for us to even consider, however we’ve had many requests asking to help. We understand the majority of America has been shut down and many people have been out of work for some time. It’s a difficult time for many, so it’s completely understood if you cannot assist.
Published Facts:
-Trigeminal Neuralgia is considered one of the most painful conditions known to mankind.
-12 in 100,000 people are diagnosed with TN.
-No known numbers on GN bc it’s RARELY diagnosed (I was shocked to read that only 150 cases were found from 1932-2012)
-- Steven Barrientos
As many of you know, Stacey was very healthy and in the gym 4-5 days a week. When she wasn’t in the gym she was running a trail, track, park or our subdivision.
She was an avid runner; having run HUNDREDS of races from a local 1 mile race to 100+ miles. Stacey completed a 102 mile race in Joplin, MO in December 2018, owning a current state record. Her next 2 ultra’s were personal best bringing in over 50 miles in under 12 hours proving 2019 was going to be a solid race year.
She then ran a 24 hr race completing 86 miles with a groin injury on March 15, 2019. As with most endurance events she had the usual post race sickness. She healed up within days. March 24th she thought she had a bad sinus infection and began treatment. Sadly, that wasn’t the case and by March 28 at 2am all hell broke loose. She woke up in excruciating pain, holding onto her face, crying and pacing around the room. In the years that we’ve been together I had only seen her cry MAYBE a handful of times, until the week this all started... then it became a daily occurrence.
Early in her treatment she was still battling the pain and competing in 12 and 24 hour races. The sicker she got, the more these conditions took over everything changed. To say that this diagnosis has changed her life, drastically would be an understatement. She no longer has energy to go to the gym or run. She works at home and struggles to make it through the day. She can no longer eat normally and remains on a strict diet. In the month of October alone she lost roughly 30lbs due to severe food intolerances as a result from medication damage. She battles daily trying to stay at an acceptable weight to be surgical ready.
TN and GN are rare disorders with no cure. When a patient cannot be treated with drugs, pain is managed with Brain Surgery.
All drugs, procedures and treatments have failed Stacey. The extent of surgery she needs can only be done by a couple properly trained Neurosurgeons due to the rarity of GN. We are going to the best, Dr Mark Linskey at UC Irvine in California.
Her original surgery date was 04/02, however COVID-19 stepped in and shut down the majority of the country. Her surgery was called off just days before we were to travel out west. She was placed at the top of the list once the hospital reopened for surgeries. They called us a few weeks ago with all pre-op appointments and a surgery date of May 28th. She will undergo a left side Microvascular Decompression (MVD), brain surgery, 4 pack on cranial nerves 5, 7, 9 & 10.
From the 5 day medical consultation trip in January, this 3 week surgical trip, along with out of pocket medical treatment from this past year, it has added up to over $15,000 out of pocket. She will have to return for another 3-week trip for brain surgery on her right side once healed enough from her upcoming surgery.
This is difficult for us to even consider, however we’ve had many requests asking to help. We understand the majority of America has been shut down and many people have been out of work for some time. It’s a difficult time for many, so it’s completely understood if you cannot assist.
Published Facts:
-Trigeminal Neuralgia is considered one of the most painful conditions known to mankind.
-12 in 100,000 people are diagnosed with TN.
-No known numbers on GN bc it’s RARELY diagnosed (I was shocked to read that only 150 cases were found from 1932-2012)
-- Steven Barrientos
Organizer
Reagan Fenstermaker
Organizer
Barnhart, MO