https://www.youtube.com/watch?v=kGZWpPk3-Kk
At the tender age of fourteen, Sarah Kash learned that she needed brain surgery for Chiari malformation, a condition where the brain tissue extends into the spinal canal. In this interview, Sarah explains what it is like to live with this chronic illness. She discusses the diagnosis, her brain surgery experience, and how she is today. You can read the interview below or click the video to watch it. The interview is also available on our podcast.
Tara Tingey (Host): Hi, welcome to Situation Positive, a positive community for those affected by chronic illness. I'm Tara Tingey, your Positivity Partner, and we're joined by special guest Sarah Kash. Sarah, how are you today?
Sarah Kash (Guest): I'm good, how are you?
Tara: Good thanks, so go ahead and introduce yourself.
Sarah: So, I'm Sarah I'm twenty-three I was born and raised and still living in Tempe, Arizona. I'm diagnosed with Chiari malformation with a fourteen-millimeter herniation with syringomyelia, which is the development of a fluid-filled cyst (syrinx) within your spinal cord, all the way down the T10. I also have ulnar neuropathy, which occurs when there is damage to the ulnar nerve that travels down the arm to the wrist, hand, and fingers, in both arms and a tethered spinal cord.
Tara: Wow! Those are a lot of big words. Tell us a little bit more about your diagnosis and what it means to those of us who may not know.
Sarah: Sure, Chiari malformation is basically, in simple terms, when your brain is falling out of your skull. You've got your spinal cord flowing fluid up into your brain and it comes all the way up. There's a hole at the base of your skull and cerebellum, which is the bottom portion of your brain. Your brain falls into the hole. That's what my herniation is and it's a fourteen-millimeters descent down into the hole. This is clogging the spinal fluid flow to my brain and is what caused the syringomyelia. The blocked spinal fluid was standing still and my spinal cord ended up pushing on my nerves causing a lot of nerve damage. I experience daily nerve pain. The syrinx, my fluid-filled cyst, slows down at my T10 vertebrae and that is what I had surgery on. Now that's cleared up. The tethered spinal cord means my spinal cord is stuck on my spine. This is not as big of an issue as the others. Lastly, my ulnar neuropathy is pinched to the point of causing some nerve damage. So those are all kind of related to one another, but separate issues on their own. Chiari causes syringomyelia and they don't really know if that is genetic or if you're born with it. They're not really sure but there's a lot of research going on with it but it's something I was definitely born with. It doesn't really develop, rather it’s caught at different stages of life depending on the person and their symptoms. So those two are definitely related the spinal cord. The tethered spinal cord could be from something developed in utero before my birth and finally, there is the ulnar neuropathy I'm not actually sure where that came from.
Tara: So, that just added to it?
Sarah: Right.
Tara: You mentioned that you were born with it, so tell us your story of when you were diagnosed?
Sarah: ` When I was fourteen, I had been a competitive gymnast for about nine years. I was doing gymnastics and I started noticing a bee sting sensation in my arms when I did certain moves. It was mostly on bars that I noticed it. I was already seeing a chiropractor since being in gymnastics your body's already pretty messed up. The chiropractor would try to adjust muscles and make sure that everything was in place and that there wasn’t a pinched nerve but that wasn't really working.
