EP39 - Chiari Brain Surgery: When Pain is LITERALLY In Your Head - Jen’s Metal Allergy Story
Our guest in this episode, Jen, suffers from Chiari Malformation - A syndrome where brain tissue extends into the spinal canal, estimated to affect approximately 1 in 1000 people.
Jen bravely underwent Chiari Decompression surgery to relieve pressure on the brainstem, cerebellum and spinal cord, but immediately knew something was wrong due to a litany of pain and symptoms following her surgery and the implantation of titanium mesh hardware.
After much research and many tests, Jen was able to confirm an allergy to nickel, a trace element not required to be listed in commercially pure titanium hardware. This podcast episode is the story of Jen’s fight through her pain, through gaslighting and ultimately revision surgery to remove the metal from her brain and to help resolve the symptoms caused by it.
In this episode you will learn:
What is Chiari malformation and what are the symptoms.
How Chiari Decompression surgery is performed.
How metal hardware is often implanted during surgery without the patient’s knowledge or formal consent.
Why it is important to continue to advocate for yourself and better outcomes.
~Links and Resources~
~ Support for Chiari Malformation: www.ChiariSupport.org
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Bobby Jones website for Chiari related disorders: https://bobbyjonescsf.org/
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~Get the Low Nickel Diet cookbook HERE.
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***Many WONDERFUL, supportive special-interest communities exist for metal allergies and diet, hardware issues, medical devices, etc., online and on social media. They have many resources and often act as a collective think-tank. I owe many parts of my recovery to knowledge obtained in such groups. Search keywords to join these groups and find your tribe!***
