I need urgent, life-changing surgery to prevent further spinal cord damage, but my insurance continues to deny it. I am in constant pain, running out of time, and being asked to pay $50,220.14 upfront to get the care I need while we fight insurance.
My name is Jocelyn, former rugby player, coach, and outdoor enthusiast, and I am asking for help during one of the most critical and exhausting moments of my life.
A Lifetime Without Answers
Since I was 7 years old, I have been living with complex and progressively worsening medical symptoms that had no clear name. As an active athlete, it was confusing and disheartening to feel my body failing me. Playing rugby, coaching, hiking, and daily life became harder. Without answers, I pushed through until 2024 when my body forced an all-stop. That’s when I realized how bad things had become.
Finally Being Heard
I began advocating for myself and found doctors who truly listened. Through extensive testing and imaging, my pain had a name. I was diagnosed with Chiari malformation, Tethered Cord Syndrome, Ehlers-Danlos Syndrome (EDS), and multiple related neurological complications. Every day, I live with chronic pain, burning nerve sensations, migraines, mobility limitations, and debilitating flare-ups that make it difficult to function, work, and rest.
The Medical Plan
My care team recommends starting a less invasive tethered cord surgery to relieve pressure on my spinal cord and brainstem before committing to cranial decompression. Acting early gives me the best chance to stop progression and possibly reverse some of the damage.
The Insurance Battle
After 7 months of fighting, my second-level appeal was recently reviewed and denied by a group of licensed professionals that included: a pharmacist, dental surgeon, physical therapist, psychologist (BCBA-D), and medical director. None of whom specialize in spinal or neurological surgery. The reason for denial? A minor missing note was used to justify labeling my surgery as “not medically necessary.”
That’s it.
I am exhausted. I am in pain every day, and I am still being told to wait while my condition risks getting worse.
Where Things Stand Now
To move forward with surgery the hospital requires $50,220.14 upfront. We are continuing to fight with a third-level appeal through my surgeon, personal appeal submission, and a formal complaint with the state. Time matters. The longer this is delayed, the higher the risk of permanent, irreversible damage.
I am trying to prepare financially in case insurance continues to deny care.
My most recent surgery date of May 22, 2026 had to be postponed because we could not raise the funds in time. We are now hoping for July 1.
How You Can Help
If you are able to donate, you are helping me:
Prevent further, irreversible damage
Stop the progression of neurological decline
Reduce constant pain and debilitating symptoms
Have a chance at a future not defined by this condition
If you cannot donate, sharing this page means more than you know.
I have tried to handle this quietly and responsibly, but I have reached a point where I cannot keep fighting this alone. Thank you for taking the time to read my story, for your compassion, and for being part of this fight with me.
Cheers,
Jocelyn”
