The Fight Inside My Body
My health journey began in May of 2023, marked by an excruciating, sudden-onset thunderclap headache. That event triggered a cascade of debilitating daily symptoms that have completely upended my life. Over the last three years, I have valiantly fought through a grueling gauntlet of expensive in and out of state travel, highly invasive testing, a plethora of imaging, and more, to hunt for spinal CSF leaks and vascular and structural anomalies - thus, my last Spotfund has been totally depleted. For Eagle Syndrome alone, I have traveled back and forth to Denver 5 times and endured two intricate, separate, bilateral surgeries through my neck to remove my styloid bones and decompress my internal jugular veins.
Despite these major surgeries, my daily symptoms remain severe and unresolved. I have further been diagnosed with Cerebral Venous Outflow Disorder (CVOD)—meaning the primary drainage highways of my brain are still impeded from compression somewhere in my body, and my body has been forced to recruit dangerous, high-pressure vascular detours. Every single day, I fight agonizing orthostatic pressure headaches, accompanied by ear fullness, dizziness and vertigo, that often reach an unbearable 8 to 9 out of 10 within an hour of being upright. My skull, brain and neck feel immense pressure and pain. I have constant, high-pitch tinnitus. I intermittently hear the turbulent whooshing of my own heartbeat in my ears (pulsatile tinnitus). My vision sometimes physically pulses with my heart rate or emits scary flashes of light, etc. I consistently feel neck-strangulation sensations on both sides, and I often have nerve "shocks and tingles" in my brain, neck and spine.
To make matters worse, I have also been diagnosed with bilateral Rib Subluxation Complex, aka "Slipping Rib Syndrome", where several times a month, my ribs "slip" and cause nerve pain and muscle spasms wrapping from my rear thoracic spine/scapula all the way around to sternum in front. Just wearing a basic bra pushes up my head pressures and exacerbates my ribs pain.
It's zero fun that I wouldn't wish on anybody. I just want a quality of life that includes far less pain/pressure and doesn't involve the constant need to lay down. I also want my fifties-years back before they are gone.
The Current Path to a Cure
Because of the extreme rarity and complexity of having my brain's plumbing and my rib cage collapsing at the same time, my medical team is referring me to top, world-renowned neurointerventional and thoracic specialists around the country. For starters (this Spotfund), I am in urgent need of scheduling a trip to see Dr. Ferdinand Hui at The Queen’s Medical Center in Hawaii for comprehensive cerebral (upper), and abdominal (lower) catheter angiogram-venograms with pressure mapping. His highly specialized way of doing these invasive tests is our best "Gold-Standard" plan to look for compressions at this time. They are needed to determine where the venous flow issues are. Depending on what he finds, treatment could include placement of permanent metal brain stents to open blocked veins, or further surgeries, all with the goal of deflating the pressure in my head, and finally giving my brain and neck a stable environment to heal. The cerebral test alone is around 30K cash pay only. This doesn't even include the abdominal test or treatments/interventions. I may need to go to Honolulu a few times to establish care and get all this done. The financial scenarios in this situation are enormous, no matter which way we stragegize.
I can't even address my ribs (other out of state consults) until my head/neck situation is under control.
How You Can Help Me
Traveling the country for medical care, while living in this condition, has been a ridiculously challenging mountain to climb, and the financial burden is overwhelming. I am facing astronomical out-of-pocket costs for all the specialized cash-pay-only neuro-vascular imaging, surgical center fees, flights, transportation, lodging, food and more. $50K is my estimated starting amount needed to cover just the Hawaii plan for now.
Due to terrible reactions to a plethora of trialed drugs, I am entirely unmedicated and my time is running out to protect my brain's neurological function before more serious, irreversible events are triggered.
Every single dollar raised through this fund will go directly toward my medical travel, specialist consultations, invasive testing, imaging and potential surgical interventions in Hawaii.
With Immense Gratitude,
Your willingness to read my story, donate, and/or share this page means more to me than words can ever truly express. Living with constant, high-level neurological pain can feel incredibly isolating, but your kindness reminds me that I do not have to carry this heavy cross alone. Whether you contribute financially or simply keep me in your thoughts and prayers, you are actively helping build a bridge to a treatment that will, hopefully and ultimately, allow me to finally live a life free of this pressure cooker.
Thank you for stepping into the gap with me, for believing in my healing, and for being a vital part of my journey back to health.
Please know that your donation is NOT tax deductible and you will not receive anything in exchange.
This is simply a donation from the goodness of your heart. It will go directly to me, minus 2.9% credit card fee. If you wish to bypass those fees (so I keep entire donation), please reach out directly for my Zelle info or to give cash. Any monies donated above and beyond my goal will be saved for future medical expenses.
If you cannot donate, please consider sharing my story. Actually, please share it either way. :-)
Again, thank you from the bottom of my heart for helping me reclaim my health, my stability, and my life.
With Love, Kisses, Blessings and Prayers,
Diana (aka ~Eagle1 ;-) )
