In 2010, after years of migraines and head pain, Asht'n was diagnosed with Chiari Malformation Type 1. It is an incurable condition wherein part of the cerebellum was pushing into her spinal column. Medications were prescribed, but by 2014, her symptoms were no longer responding. She found herself in the emergency room several times a week for IV medication that would basically put her to sleep until the extreme pain had passed. After much research, Ash traveled to Cincinnatti, OH to a neurosurgeon more familiar with her rather rare condition for what's called a decompression surgery. You can see the long, zipper like scar on the back of her head and neck. Unfortunately, after returning home to South Carolina, Asht'n had to be rushed to the hospital with a life threatening MRSA infection in the surgical site. After 2 more surgeries, Asht'n came home with a open wound and pic line to treat the infection.
Fast forward to 2015, Asht'n was pregnant with her first child. She began having seizure like episodes and extreme pain again. She discovered that her Chiari had progressed and her cerebellum was now protruding 18mm into her spinal cord. At this time, Asht'n was put out of work by her doctors. Her husband was also laid off of his job. They had to move in with her mother, who at the time had been recently widowed with the death of Asht'n father due to multple myeloma, a cancer of the blood.
Currently, Asht'n is in pain daily and continues to have seizure like episodes. She cannot work, and she and her husband are living with her mother. As her episodes and pain worsen, Ash has had to rely heavily on the family that surrounds her. Luckily she does have this support. She has found a new doctor in Arkansas that specializes in Chiari malformation. Having already traveled to Little Rock and stayed over the Thanksgiving holidays, Asht'n has now found that she has Chiari malformation, Syringomyelia, Elders-Danalo syndrome, intercranial hypertension and POTS/Dysautonomia due to the compression of her brain stem. These are conditions that have no cure.
The doctor in Little Rock has suggested further surgery for decompression as well as the possibility of a shunt to relieve the pressure on her brain. Unfortunately, this will require another lengthy hospital stay out of state. Asht'n's mother and aunt will be traveling with her, both taking FMLA. At this point, the trips to Arkansas (including gas, food and hotel stays) as well as this future trip for more surgery are a hardship on whole family. Medical bills that were already in the hundreds of thousands are added to, and every day bills are a hardship for a mother who is taking unpaid leave to care for her adult daughter.
Please support Asht'n in her fight for a daily life that doesn't include pain that makes caring for herself and her son an impossible task. Support Asht'n's family in helping her find a doctor and hope in the long fight she has had and continues to have. We are only asking for help in defraying the travel costs for her and her family in these latest expenses.
- Lonni Gustafson
- Anne Hainisch
- Theresa Matutino Hamm
- Erica Wilbanks
Organizer and beneficiary
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