Archive for the ‘Chiari Malformation’ Category

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Outcomes of Craniocervical Instability Fusion Surgery in People with EDS

Posted on March 10, 2024

A recent study by Henderson et al. found significant benefits for EDS patients with severe craniocervical instability who underwent occipito-cervical fusion surgery.  Craniocervical instability is one of the most severe neurological complications of the Ehlers-Danlos syndromes, causing many affected individuals symptoms such as headaches, severe full body pain, dizziness, nausea, blurred vision, paresthesia, fatigue, weakness, […]

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Unraveling Tethered Cord for EDS Patients (simplified version)

Posted on January 13, 2024

Special thanks to EDS medical provider Pradeep Chopra, MD for reviewing this article curated by our media team. Learn more from his expertise in his video webinar on EDS Pain Management (discussion on tethered cord at the 1:13 mark).   Intro: Hope for Tethered Cord Syndrome Patients Tethered Cord Syndrome (TCS) is a common condition found […]

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New Cervical Spine Instability Publication: The Authors Explain Their Findings

Posted on March 27, 2023

For Chronic Pain Partners Newsletter, writer Christie Cox speaks with two pioneers in the Ehlers-Danlos community Leslie Russek and Susan Chalela, about their recent publication on upper cervical instability (UCI). Leslie Russek is a DPT, PhD, and Professor Emeritus of Physical Therapy at Clarkson University and an Orthopedic Certified Specialist Physical Therapist with over 30 […]

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Surgery Prep: Meeting Your EDS Hospital Stay Needs

Posted on February 22, 2023

How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS) This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy. People with Ehlers-Danlos syndrome (EDS) often need surgery […]

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CSF – Unite@thehill – June 23-25, 2018

Posted on April 11, 2018

For the past few years, CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening. I n February 2015, Congress voted to increase the NIH budget by $31.3 billion to support more biomedical research. In 2016, […]

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Free Webinar – “Tethered Cord Syndrome in Ehlers-Danlos” – Recording Available

Posted on January 5, 2016

Watch the recording of this free webinar. Sponsored by www.bodysupportstore.com TOPIC: “Tethered Cord Syndrome in Ehlers-Danlos” PRESENTER: Petra Klinge, MD, PhD Click IMAGE  for a link to this recording Click here for a link to the presenter’s slides INVITE YOUR FRIENDS: Spread the knowledge!  Please post this announcement on Facebook, and forward this invitation to others who may […]

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