I was what you would consider a “typical developing child” growing up, I did not have any health issues and was able to enjoy much of my childhood. My journey to finding answers in regard my health began at 15 years old, when I began rapidly losing my vision in my left eye. I dealt with severe headaches and the doctors struggled to draw a connection to my declining vision. I went from 20/20 vision to 20/400 in my right eye and 0 vision in my left. I was considered legally blind. I had to relearn how to navigate life with very little vision.

Little would I realize then, that this would be the beginning of a long road with specialists, procedures, frustration and even more frustration. I underwent eye injections to try and reduce the inflammation, leaking blood vessels in my eyes and optic nerve issues. My case stumped some of the biggest hospitals and specialists in the Bay Area. Eventually a doctor had noticed that for over 5 years every brain MRI listed “low lying cerebral tonsils” and decided to dig deeper into this issue. I received a diagnosis of Chiari Malformation Type 1 and had a full CSF blockage. Soon after, I required my first decompression surgery to help make more room to allow CSF to flow and taking pressure off my optic nerves. Things did not change, my positional headache was worse than ever, blindness, nausea/vomiting, joint pain, neuropathy, etc. Nothing improved from surgery.

Fast forward a few years, I was told that a second decompression surgery was required, which I agreed to. It resulted in a rip in my dural patch causing a cerebral spinal fluid leak at the surgical site. After these two decompression and a CSF leak repair surgery, my vision had improved significantly yet I was worse off symptom wise than I was when I initially began noticing changes in my body. Sadly, I was told from my specialists that there was nothing more they could do for me. They referred me to the headache/face pain clinic. After many failed attempts at managing my pain with medications, my doctor mentioned that my symptoms resembled a spinal fluid leak and that there is a doctor who is navigating research and I should be evaluated.

My new leak doctor requested many tests to evaluate for a potential leak, the first being blood work and prolactin levels, brain to spine MRI’s with and without contrast, CT , digital subtraction myelogram, MR myelogram, and the list goes on. After a few months of investigating we were able to confirm that I suffer from spontaneous intracranial hypotension, meaning that I have multiple leaks or suspicious areas in my spine, that happened spontaneously (without known trauma). My doctor mentioned that my Chiari diagnosis is what is classified as an Acquired Chiari Malformation.

The reason I am writing about my story here today is to spread awareness and bring recognition to spontaneous cerebral spinal fluid leaks, because this is something that I will face for the rest of my life. I have now had two decompression surgeries, two CSF leak repairs with hemi-laminectomies and duraplasty, seven epidural blood/fibrin glue patches, and sadly with even more procedures/surgeries to come. In my case, my Chiari was not congenital; it was acquired due to my low cranial pressure from a chronic leak in my spine. Nearly ten years after the onset of my problems, I have very important answers that would’ve been extremely useful before agreeing to have decompression surgeries. My hope is that if you are reading this, and have been diagnosed with Chiari Malformation, you will take the time to consider the possibility of leaks (even if you were told that it is a congenital Chiari Malformation. If I could help one person with sharing my story, someone like me, who is struggling to navigate their care with a map that is upside down, backwards and jumbled, it is worth the time in telling my story! We must be persistent, continue to advocate for ourselves, and truly be willing to learn to educate those around us. Even with some temporary success from surgery, my spontaneous leaks can occur at any time and for any reason or no reason, they do not discriminate.

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