The Chiari Champion

Noah Forman
  • 4.5 (15)
  • PERSONAL JOURNALS
  • UPDATED WEEKLY

Are you someone, or have a loved one, with Chiari Malformation, Syringomyelia, or Ehlers Danlos syndrome. Searching for a community that will raise some questions, find some answers, and share some humor and personal experiences in a fun and engaging forum? Welcome to The Chiari Champion, i'm Noah Forman, and this podcast's purpose is to raise awareness, seek solutions, and share our stories so that we can grow, heal, and bond - to live life to its fullest and find strength in our purpose. So join me on this journey, where i'll be joined by special guests, medical experts, innovative thinkers, and prominent voices in the field. The Chiari Champion…let's start conquering each week…together. Follow us now on Apple Podcasts, Spotify, or whenever you enjoy your shows.

  1. 01/01/2024

    Ep. 17 - Funny Mother Tucker: from Nurse to Patient

    Beth Tucker, a 24-year survivor of Chiari, Syringomyelia, and EDS talks about her diagnosis before the digital age, and how her career as a nurse prepared her for her journey as a patient. Beth speaks on self-advocacy, even when unable to stand up or walk. Determined to not be defined by a diagnosis, she uses her own coping strategies of humor and storytelling to create a version of herself, separate from her life as a patient. Starting on TikTok, she grew to over 10k followers and became a stand-up comedian (even featured in a recent movie!). Make sure to tune in to this episode to learn more about Beth and her fascinating life of overcoming adversity.

    34 min

  2. 10/26/2023

    Ep. 16 - From Setbacks to Comebacks: Sharing Thoughts, Finding Hope

    Support group (join "The Chiari Champion (Support & Podcast)" and follow "@the_chiari_champion" on Instagram for episode drop dates and sneak peeks)   The comeback is stronger than the setback   Life in Three Acts   Being the helper / receiving help   Pouring from an empty cup   Don't keep moving the couch by yourself   We ask the people in the Chiari Champion Facebook group:   1. What do you want to say to others facing CM and related disorders?   2. What is the hardest part of having CM or a related disorder?   3. What is something you want the world to know about CM and related disorders?   4. What is a topic you want to hear a tangent about?   5. How has chronic illness made you think about your childhood?   Flare-up box   Chiari Malformation Zero   My body chose violence   Josh Pray (comedian)   Sit with Warriors, the conversation is different

    27 min

  3. 10/14/2023

    Ep. 15 - Empowerment and Connection: Navigating Life's Challenges with Chiari Malformation and Related disorders

    "In this episode Noah will explore the following topics, make sure to hear about the Pain Voice, Toxic positivity, and the bystander effect!  Quote of the day! Best practices in decision making  Chiari decompression calculator How to view chances in life How to fight self negative talk (Christie Cox) What the pain voice is and how to fight it (Christie Cox) The connection between the mind and body  The power of being present in the moment  Toxic positivity How to play your cards to win Fostering relationships (Kristin Means) Bystander effect!

    28 min

  4. 07/11/2023

    Ep. 14 - Empowering Your Journey: Insights from a Top Neurosurgeon on Chiari and Related Disorders

    Dr. Tomei, a highly regarded medical professional, has been recognized as a Cleveland Top Doctor since 2019. Her remarkable expertise lies in the field of neurosurgery, where she serves as the Division Chief at Rainbow Babies and Children's Hospital in Cleveland, Ohio. With a specialization in Chiari malformation, Syringomyelia, tethered cord, Hydrocephalus, and various related disorders, Dr. Tomei brings extensive knowledge to the table. In this episode, she generously imparts her wisdom on the crucial aspect of collaborating with a team of medical professionals, emphasizing its significance in your personal journey with your diagnosis. By delving into the diagnosis itself, its implications, and the expected outcomes, Dr. Tomei sheds light on the key elements of symptoms, decompression surgery, and follow-ups, which form the backbone of managing Chiari or related disorders. Covering all essential aspects, you will gain insight into recognizing and addressing symptoms, effectively tracking them, understanding the surgical process, and navigating postoperative follow-ups. Immerse yourself in this enlightening conversation with a distinguished expert in the field of Chiari and related disorders, as you acquire invaluable knowledge to empower your medical journey.

    31 min

  5. 03/01/2023

    Ep. 13 - Dealing and Healing with Chronic Illness

    In this episode of the Chiari Champion podcast, we feature an author and advocate who is on a mission to help find answers for others through what helped her heal.  Christie Cox battles complex disorders including hypermobile Ehlers Danlos syndrome, POTS, and craniocervical instability. While her knowledge is specialized in EDS, her tips and tricks are applicable to Chiari malformation, Syringomeilia, and all related disorders. Her best-selling book, Holding It All Together When You're Hypermobile, launched in 2022. The book explores hypermobile EDS, it's comorbidities, tips on getting diagnosed, coping strategies, lifestyle changes, and tons of other resources on how to get help. Her goal was to help fellow patients who struggle with a 12+ year average time to diagnosis. She believes EDS and hypermobility are no longer rare, but rarely correctly diagnosed. That is changing due to advances in research, hypermobility is becoming more recognized - thought to be now 1 in every 500. Her book shares a proven path to help you overcome adversity, achieve wellness, and reach peace with your diagnosis. We also speak on medical research that presents tools for earlier diagnosis and treatment. Most importantly, we'll teach you how to foster a positive mindset in the face of chronic illness. Christie Cox definitely helps to provide the tools needed to build confidence and empower yourself with knowledge that will change your life for the better.

    44 min

  6. 12/20/2022

    Ep. 12 - The Patient Becomes the Doctor/Researcher

    Roman Fenner is a 22 year old research technician at Duke University and is applying to medical school. He was diagnosed with EDS alongside his mom and sister at the age of 9 by a geneticist. Over the next 7 years, in addition to his original diagnosis of Hypermobile Ehlers-Danlos syndrome, he was diagnosed with Cranio-Cervical Instability, Chiari, Tethered Cord, Intracranial Hypertension, POTS, Mast Cell Activation Syndrome, and Dysautonomia. He now hopes to achieve his MD/PhD so he can study EDS, Chiari, and related disorders to then develop newer, and more effective treatments for patients. He has already presented his research on these disorders across the country including conferences at Harvard University, and at Unite@theHill (an event hosted by the Bobby Jones Chiari and Syringomyelia Foundation where patients have the opportunity to lobby congress for increased funding and awareness). Like all of us, Roman had to give up the things he loved after his diagnosis, but he found a new passion in music. This has given him a way to cope with the severity of his disorders, leading him to even dual major in both biology and music in college. He encourages all patients to find something that they can be passionate about while tackling these disorders.

    46 min

  7. 12/13/2022

    Ep. 11 - The Life Altering Surgery That Changed a Quadriplegic Woman Into a Fully Able Bodied Local Teacher

    Kristina Summers, as a 15-year old girl, a Chiari and Syringomeilia warrior became quadriplegic. She was devastated when told there was a 50/50 chance that she would make it off the operating room table. After a successful surgery, this medical miracle became fully able bodied. Twelve years later, she is a kindergarten teacher with a heart of gold. Her past traumatic life experiences allow her to live in the moment, and be grateful for everything she is able to do. I can't wait for everyone listening to feel the light that she illuminates.

    39 min

  8. 11/17/2022

    Ep. 10 - You Are Not Alone: A Family with EDS

    Kristin Means and her son, Braeden, talk about their daily life with Ehlers-Danlos syndrome. Kristin played collegiate softball and was an active child her whole life, when her EDS pain became overwhelming, she had to modify the way she thought about exercise. To date she has had 38 surgeries! Braeden was a child constantly in pain, but put on a brave face for doctors, causing them to push off a much-needed surgery. He now finds joy in singing and exercising with his family. Yoga, swimming, or walking together is what improves the mental health of this family, decreasing their physical pain. After finding the Bobby Jones Foundation, they feel that they are no longer alone in their battle.

    35 min
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4.5
out of 5
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About

Are you someone, or have a loved one, with Chiari Malformation, Syringomyelia, or Ehlers Danlos syndrome. Searching for a community that will raise some questions, find some answers, and share some humor and personal experiences in a fun and engaging forum? Welcome to The Chiari Champion, i'm Noah Forman, and this podcast's purpose is to raise awareness, seek solutions, and share our stories so that we can grow, heal, and bond - to live life to its fullest and find strength in our purpose. So join me on this journey, where i'll be joined by special guests, medical experts, innovative thinkers, and prominent voices in the field. The Chiari Champion…let's start conquering each week…together. Follow us now on Apple Podcasts, Spotify, or whenever you enjoy your shows.

Information

  • Creator
    Noah Forman
  • Years Active
    2022 - 2024
  • Episodes
    18
  • Rating
    Clean
  • Copyright
    © 2022
  • Show Website
    The Chiari Champion