04 My Brain Was Falling Out of My Skull! (episode page)
Description: Becca talks about having Giardia as an infant, traveling with an unpredictable chronic illness, having brain surgery—twice, the wonders of high sodium diets, and her video game web series, Millennial Fair. She lives with Ehlers-Danlos Syndrome, Arnold Chiari Malformation, and POTS.
Hey there. I want to welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.
In this episode, I talk to Becca about how she had Giardia as an infant, pediatric migraines, having brain surgery—twice, the wonders of high sodium diets, and her video game web series, Millennial Fair. We cover her Arnold Chiari Malformation, Ehlers-Danlos Syndrome, and dysautonomia. This episode is the fourth in our series celebrating Dysautonomia Awareness Month. With the podcast I plan to feature a wide variety of health experiences, but dysautonomia is personal for me. It affects me every single day, and has for most of my life, so I wanted to kick off the show with a series of interviews about something so close to my heart.
I want to make clear that the In Sickness + In Health podcast or any of its associated content IS NOT medical advice. If you’re experiencing a medical issue, please seek qualified and timely medical help. I know the system sucks, but I wish you a lot of luck.
We’re all going through this together, but I can't stress enough how different we all are, even if we were to have identical medical files. There are so many factors that go into shaping a person's experience of health and illness, and just because something worked for one person does not mean it will work for you or anyone else. I want to ask my audience to respect the very personal decisions of my guests, and remember that the choices of others do not affect or reflect anything onto their own choices.
[Clip of Becca talking about Giardia]
Look for all the episodes in our Dysautonomia Series in your podcast feed or check insicknesspod.com. The non-profit, Dysautonomia International, has been working hard to raise awareness, and their slogan for the Awareness Month is "Make Some Noise for Turquoise," so that’s exactly what we’re doing. If you want to know more about Dysautonomia, go back to episode 01, “Dysauto-whatta?!” The president of Dysautonomia International gives us a crash course on just what dysautonomia is, and we talk about the diagnostic delay many patients face. I interviewed multiple people with dysautonomia because it can affect individuals with different primary diagnoses in drastically different ways. Myself and each person I interviewed have a form of dysautonomia called Postural Orthostatic Tachycardia Syndrome. I know it’s a mouthful, we call it POTS for short, but POTS is only a small piece of what each of us have going on.
Like myself and yesterday’s interview subject, Becca also has EDS and POTS. If you want to know more about both, go back and listen to episode 03, “Accessibility Means More than Ramps - Part 1.” We discuss the challenges and surprises of living with the two. But Becca has another obscure and weird-sounding diagnosis to share with you! She has something called Arnold Chiari Malformation, which basically means:
[Becca talking: “My brain is falling out of my skull…causes a whole slew of weird, weird symptoms… everything is just so out there.”]
We all have a hole at the base of our skull, called the forAmen magnum, which is latin for “great hole.” It is through this hole that the spinal cord is supposed to descend from the brain stem. In people with Chiari, that hole is often smaller than normal, and the lower, hind part of their brain—the cerebellar tonsils—actually start to protrude through. It is thought that problems with the flow of cerebrospinal fluid are responsible, at least in part, for the bizarro symptoms many Chiari patients experience.
We still don’t really know why Chiari Malformations happen; they can occur on their own, or in combination with conditions like EDS, and are also associated with POTS. It is thought that the majority of patients with Chiari have had it since birth. There are five types of Arnold Chiari Malformation, each involving symptoms stemming from problems where the brain and spinal cord connect.
Becca will talk more about living with Chiari, EDS, and POTS in the rest of this episode. Tomorrow’s episode is the last in our Dysautonomia Series. Cathy will tell us about trying to find balance in managing and thinking about her condition, The Spoon Theory, parenting with chronic illness, and how her condition has affected her music career. She lives with Rheumatoid Arthritis, Sjogren’s Syndrome, POTS, complex chronic headaches, and Interstitial Cystitits.
So I hope you’ll subscribe and tune in to In Sickness + In Health. We have a lot of great stuff coming up for you, including the episodes celebrating Dysautonomia Awareness Month that are up this week! You can find us at insicknesspod.com, and Twitter Tumblr and Instagram @insicknesspod. Like us on Facebook! Do whatever it is you do to check us out on Google+ because we’re there too. We’ll be posting updates and content related to the show on the In Sickness + In Health blog and on social media.
If you can take the time rate and review us on iTunes, we’d really appreciate it. It helps other people find the show; tell your family, tell your friends, and tell your doctors! And stay with us right now to hear the rest of my conversation with Becca.
The operation is meant to create more space around, or decompress, that hole at the base of the skull. This is done by removing a small portion of bone at the back of the head, which is called a suboccipital craniectomy. In some cases the bony arch of the C1 vertebra may be removed. These steps expose the protective covering of the brain and spinal cord called the dura. The bone removal relieves compression of the tonsils, and sometimes that procedure alone may restore normal CSF flow. Depending on the size of herniation, the surgeon may take steps to shrink the tonsils. This shrinkage ensures that there is no blockage of CSF flow, and is then patched with synthetic or biological material. The enlarged dura opening and the space around the tonsils provide relief for many patients....
But if you haven’t figured it out by listening to the episodes so far in the Dysautonomia Series, patients like us never quite go as planned.
[rest of interview]
Thanks for listening In Sickness + In Health. Subscribe and stay tuned for everything we have to come, and keep an eye on your podcast feeds or our website for the last episode in this series celebrating Dysautonomia Awareness Month! We’re posting a new one every day this week, and we can’t wait to hear your feedback. Please rate and review us on iTunes, which helps other people find the show, and tell your family, tell your friends, and tell your doctors!
And don’t forget to be excellent to yourselves and each other.