Thank you for taking the time to learn about Tricia Barnello; our mother, daughter, sister, and friend and her struggle with a Chiari Malformation diagnosis and the delicate brain surgery that followed.
For those who do not know Tricia well, she is a 37-year old single mom of three beautiful children; Zachary, 15, the next Kevin Durant for sure; Angelina, 13, one of the next biggest soccer stars on the local horizon; and Mia, 9, who dreams of being in the great Riverdance production as an Irish step dancer. Tricia, herself, is an RN and currently works as a nurse case manager out of her home in Camillus, NY.
On May 13, 2014, Tricia underwent decompression brain surgery in an attempt to relieve symptoms associated with a Type I, Chiari Malformation of the brain. This is a neurological disorder where part of the brain, the cerebellum (or more specifically the cerebellar tonsils), descends out of the skull into the spinal canal. This resulted in compression of significant nerves and the spinal cord. Due to the lack of experienced medical providers in this field, she was forced to go out of network to receive the surgery that she desperately needed to save the function of her eyes. Therefore, she was referred downstate to the Chiari Institute and tho renown Chiari surgeon, Dr. Paulo Bolognese.
Because the complexity of her surgery was so great she was unable to work for several months leaving her with mounting debt from family living expenses as well as follow-up appointments to her surgeon in New York City, on-going physical therapy, expenses for home medical equipment and medications, all on top of over $25,000 of uncovered surgeon charges for the actual brain surgery. Even with help from family and loved ones they can't begin to cover the debilitating cost of this surgery and its repercussions.
Tricia is one who suffers in silence, keeping everything inside so not to worry anyone else. But, it is very easy to see in her face and eyes that this financial pressure is weighing very heavily on her shoulders and is compromising her physical health and recovery. We are hoping that we can relieve her of some of this pressure and allow her to concentrate on getting better and managing the progression of her disease with a lighter burden.
We would like to say thank you in advance for any donations and prayers offered on Tricia's behalf.
For more detailed information about the possible devastation of Chairi Malformation and Tricia's journey with this condition, please continue to read below.
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One year ago, after dozens of various types of doctors and examinations, Tricia was diagnosed with a Type I, Chiari Malformation of the brain. This resulted in compression of parts of her brain and spinal cord. For Tricia this meant compression of her optical nerve resulting in a severe build-up of pressure in her eyes resulting in loss of eye-muscle coordination which made it very difficult and uncomfortable to keep her eyes open and functioning. As time went on, the amount of time her eyes were able to function narrowed drastically forcing her to retreat to the darkness of her bedroom for the greater part of the day and night. In additional to eye complications, sheexperienced severe headaches, constant pain in her neck and shoulders as well as balance and coordination issues.
After numerous, exhausting evaluations, by now multiple eye professionals, she was misdiagnosed with migraines and an adult version of lazy eye. It was determined that it was a non-surgical situation and she was told that she would have to learn to cope. At this time, she was referred for Vision Therapy with an occupational therapist. Jen, was a Godsend. It became clear to her very quickly that Tricia tested like someone with a Traumatic Brain Injury. This discovery led to a specialized MRI which led to the diagnosis of Chiari Malformation Type I. After traveling to New York City for an complete evaluation, Tricia was scheduled for surgery. It was a very delicate and extremely expensive surgery and she came through it well. After a week in the hospital, she went home to convalesce and continue with follow up therapies.
To date, as a result of the surgery she has obtained function of her eyes, however, she continues to struggle with daily pain, as well as concentration and attention issues, and instability in her neck. Her current treatment plan is obtaining an MRI every six months with close monitoring by her surgeon. She also requires frequent appointments with her primary care doctor, optometrist, physical therapist and neurologist.
For more information on Chairi Malformation and related diagnosis please visit www.csfinfo.org.