Robyn's Brain Surgery
Donation protected
Dr. Shahinian - Skull Base Insititute
In the summer of 2014, while standing in the bathroom Robyn had an strange episode of wavy vision that she had no idea would lead her to this place. Over the course of the next 7 months, she started experiencing many symptoms such as numbness and tingling on one side of her body, burning sensation in her palm and foot, the sensation of just getting off of a boat (sea legs), random twitching and tremors, short term memory issues, speech issues, daily head pressure and headaches, sleep issues and vision issues. All of these things began to increase in frequency and intensity. Now they are constant.
Not wanting to alarm anyone, she kept these things hidden as well as she could, until her husband expresssed concern and started asking questions. Shortly thereafter, while standing in the kitchen on a sunny day, her wavy vision went black. She sank to the floor and waited in darkness to see if her sight would return. Thankfully, it did.
She made the appointment to see her primary care doctor. After several tests, her brain images revealed a tumor/cyst/lesion on the Pineal Gland, deep within the brain. The wait began to see a "specialist." After seeing several neurologists, neurosurgeons, and opthamologists, it was clear that they all had no idea what the symptoms were related to, but all said the tumor/cyst/lesion was just an "incidental finding."
By now, Robyn's life has been impacted greatly. She doesn't drive for fear of losing her sight (which is daily), she spends her days in bed with headaches, and when she is up and around her sea legs walk her into walls, doors, and sometimes drop her to th e floor. The lack of sleep (because the Pineal gland regulates melatonin) leaves her exhausted, physically, mentally, and emotionally.
Setting out to research this "incidental finding," Robyn found out she wasn't alone. Thousands of people are traveling down this same path of countless doctors and no answers, sometimes for years. However, after reading many stories of others who pursued the removal of this "thing in their head," and complete resolution of symptoms, Robyn decided she had to find someone to listen to her.
Dr. Shahinian, at the Skull Base Institute in Los Angeles, California, invented the endoscopic procedure to remove this type of tumor. He is one of only four doctors in the world that currently perform this delicate surgery and he has agreed to do this for Robyn on March 18th. This was not an easy decision, but one made with the hope of restoring her life. She wants to get back to work, spend time with her family and friends again, and repay everyone's kindness as she pays it forward.
Robyn and Doni will be traveling to Los Angeles on March 15th and returning, barring any complications, on March 25th. Insurance will cover a portion of this very costly brain surgery, but there is still great excess to be paid, as well as travel and lodging while in California and costs for recovery. Robyn's inability to work has caused financial hardship as well.
Robyn's brain will need to rest after surgery and worry about finances will not aid in her recovery. Please help me and others raise the funds to cover these costs, so that Robyn can get back to living her life, free of pain and darkness. Thank you for sharing this campaign and getting the message out there that Pineal tumors are real and devasting, but treatable.
Jamison Boutell
(Robyn's Brother)
In the summer of 2014, while standing in the bathroom Robyn had an strange episode of wavy vision that she had no idea would lead her to this place. Over the course of the next 7 months, she started experiencing many symptoms such as numbness and tingling on one side of her body, burning sensation in her palm and foot, the sensation of just getting off of a boat (sea legs), random twitching and tremors, short term memory issues, speech issues, daily head pressure and headaches, sleep issues and vision issues. All of these things began to increase in frequency and intensity. Now they are constant.
Not wanting to alarm anyone, she kept these things hidden as well as she could, until her husband expresssed concern and started asking questions. Shortly thereafter, while standing in the kitchen on a sunny day, her wavy vision went black. She sank to the floor and waited in darkness to see if her sight would return. Thankfully, it did.
She made the appointment to see her primary care doctor. After several tests, her brain images revealed a tumor/cyst/lesion on the Pineal Gland, deep within the brain. The wait began to see a "specialist." After seeing several neurologists, neurosurgeons, and opthamologists, it was clear that they all had no idea what the symptoms were related to, but all said the tumor/cyst/lesion was just an "incidental finding."
By now, Robyn's life has been impacted greatly. She doesn't drive for fear of losing her sight (which is daily), she spends her days in bed with headaches, and when she is up and around her sea legs walk her into walls, doors, and sometimes drop her to th e floor. The lack of sleep (because the Pineal gland regulates melatonin) leaves her exhausted, physically, mentally, and emotionally.
Setting out to research this "incidental finding," Robyn found out she wasn't alone. Thousands of people are traveling down this same path of countless doctors and no answers, sometimes for years. However, after reading many stories of others who pursued the removal of this "thing in their head," and complete resolution of symptoms, Robyn decided she had to find someone to listen to her.
Dr. Shahinian, at the Skull Base Institute in Los Angeles, California, invented the endoscopic procedure to remove this type of tumor. He is one of only four doctors in the world that currently perform this delicate surgery and he has agreed to do this for Robyn on March 18th. This was not an easy decision, but one made with the hope of restoring her life. She wants to get back to work, spend time with her family and friends again, and repay everyone's kindness as she pays it forward.
Robyn and Doni will be traveling to Los Angeles on March 15th and returning, barring any complications, on March 25th. Insurance will cover a portion of this very costly brain surgery, but there is still great excess to be paid, as well as travel and lodging while in California and costs for recovery. Robyn's inability to work has caused financial hardship as well.
Robyn's brain will need to rest after surgery and worry about finances will not aid in her recovery. Please help me and others raise the funds to cover these costs, so that Robyn can get back to living her life, free of pain and darkness. Thank you for sharing this campaign and getting the message out there that Pineal tumors are real and devasting, but treatable.
Jamison Boutell
(Robyn's Brother)
Organizer
Robyn Hietala Bilyeu
Organizer
Damascus, OR
