Breana Carson Rodriguez- Chiari Malformation 1

Hi, my name is Breana Carson-Rodriguez and I was recently diagnosed with a rare brain condition called Chiari Malformation-1. In the summer of 2023, a brain MRI revealed that my cerebral tonsils hang 5mm lower than average, pushing the cerebellum of my brain into my spinal canal. When this happens it can restrict the flow of the cerebrospinal fluid between the head and the spinal cord causing all kinds of pain and neurological issues.

My symptoms started in December of 2022 when I went to bed feeling normal and woke up with the left side of my face, both arms, and my tongue feeling numb. My speech has been slurred, I have been having difficulty swallowing my food, as well as difficulty lifting my arms. As time went on a slew of other symptoms have appeared such as tinnitus, intense head pressure, tightness, pressure behind my eyes, loss of taste, fatigue, breathing spasms, and dizziness. Most forms of physical activity increase the pain including short walks. This debilitating pain has prevented me from holding a job, carrying out daily tasks, getting a good nights sleep, and living a normal functional life.

After a year of seeking medical advice from specialists my neurosurgeon has recommended a procedure called decompression surgery. However, due to my specific symptoms my doctor could not assure me that they would dissipate.

After much research the only option for a full recovery is a procedure done at the Chiari & Siringomielia & Scoliosis institute in Barcelona, Spain. Their doctors are highly specialized in conditions such as Chiari, and practice a treatment called the Filum System that takes pressure off the spinal cord by entering through the lumbar. The treatment is minimally invasive, less life threatening, and produces amazing results. Patients often see a dramatic reduction in symptoms and are able to return to their normal activities. The past month I’ve been in contact with a representative for foreign patients at the Chiari institute and have been sending them my MRIs. They have reviewed my imaging and decided I am a good candidate for the surgery and set me up a tentative appointment date for early March. The Filum System procedure is currently believed to be the only option for my crippling symptoms. This treatment is not offered in the US.

Since the procedure is done over seas, insurance will not cover it. I would be required to stay 10 days after the procedure. Your generous donation no matter how small would go directly towards the cost of surgery, post operative care, and associative medical expenses.

The recommended surgery is not just a medical necessity its a life line for me. With out this procedure the condition could worsen causing permenant damage to my nervous system, dulling my mental faculties, and worsening my quality of life. The sooner we can move forward with surgery the better my chances of a pain-free and functional life. Anything you can do to help me get my life back and make this a reality would be greatly appreciated.

I want to express my deepest gratitude to each a every one of you who takes the time to read my story and consider supporting me.

With love,

-Breana

Links: Chiari Institute Website