Help Tricia's Medical Expenses

I've weathered some pretty bizarre and poorly timed medical issues over the last 10 years, including broken bones, illnesses when traveling both near and far, and surgeries. Since 2016 in particular, I've suffered some debilitating issues that have moved from one part of my body to the next, with an unsuccessful ankle surgery, chronic neck pain, and incapacitating disc herniation. As a last ditch effort to resolve my back pain, I received an epidural in February 2020 (similar to what is given during labor). When that didn't work, I was advised by multiple health care professionals to undergo a laminectomy surgery which was performed March 16, 2020 (aka, the eve of the COVID 19 pandemic). After, I noticed odd amounts of sinus drainage, vertigo, increasingly clogged ears, jaw pain, etc. I lived the first six weeks of the pandemic in isolation and in pain while recovering, but hopeful for a future where I could move better. While I had less pain, I also constantly felt sick, exhausted, in pain, and in a fog. I felt less pain in my back, but so fatigued and sick I couldn't properly rehab it.

 

I spent months not knowing what, if anything, was wrong at all, if I was just feeling the pandemic blues, or what. Finally, I started my medical adventure in the middle of the pandemic, which also entailed many, many COVID tests and insanely strict precautions. 3 ENTs, 2 allergists, 2 sleep tests, 4 sleep doctors, 1 audiologist, 3 chiropractors, 2 GPs, 1 concierge doctor, 1 neuromuscular dentist, 2 neurologists, 1 neurosurgeon, 7 massage therapists, 1 optometrist, 1 neuro-opthamologist, 4 hours in an MRI, and 18 months later I finally had a possible diagnosis: a cerebrospinal fluid leak. Once I got over the very scary name and anger it took SO MUCH WORK to make progress when I had scant energy to spare, I became convinced this is what I was experiencing. All the hours/day in bed, the brain fog, the pain in my head and neck, and the barometric pressure so incapacitating I fled Chicago for the calmer climes of the Bay Area, all these things finally made sense and somehow only ONE doctor put the symptoms together. (all during COVID, people!!)

 

I did more battle, this time with insurance, specialty doctors, and internal boards, and am now currently undergoing care with a specialist at Stanford University, one of the few specialists in the entire country who now happens to be in my backyard. "They" don't know anything about these leaks: why or how they start exactly or even what a surefire way to cure them is. My battle to a more normal life continues as I'm coming off my first blood patch procedure and am anticipating needing a second. (As of 3/18, I've had my second patch and it's a success so far, but I'm struggling a bit now to cope with the high pressure side effects which are similarly debilitating.)

This all may be too long, but I wanted to give more scope into why I'm putting this ask out for donations. As you can imagine, every single medical intervention and scan has cost money; treatments recommended to "fix" these red herring symptoms like my jaw pain and sleep issues have cost money insurance doesn't want to cover; my lack of ability to readily prepare food for myself or clean my home myself in the few hours I'm not horizontal has cost money; my move to better climes and the blood patch procedures, requiring 3 days where I can only get up to go to the bathroom and have to even eat lying down requiring my mother to fly out to assist me, costs money. I've set the donation for an amount that is pie in the sky, and yet still doesn't represent the pure monetary costs of the last few years. Any support you are able to provide, whether financially or emotionally, is much appreciated and can go a ways to allow me to focus more on continuing the fight towards better health.

 

Finally, even if you are unable to provide either of the above forms of support, I want to spread awareness. Steve Kerr , a former Chicago Bull and Warriors head coach, was out during some critical playoff games in the mid 2010s due to "complications from back surgery." His issue wasn't pain--which I know I assumed at the time when reading headlines--it was a CSF leak. George Clooney, CSF leak. Grey's Anatomy has chosen recently to have a CSF leak storyline, but they chose to go the route of "mystery fluid leaking out the nose," which is a different permutation of the leak than mine. Beyond well known people, the more I learned and spoke about a possible CSF leak, the more I heard of friends of friends, coworkers, my allergist's brother, my dog walker, a podcast guest, etc. all whom had a CSF leak. CNN is the latest to highlight one person's journey . I'm encouraging my Chicago epidural provider to do more screening and trying to spread awareness to those I know who may obtain epidurals in the future (whether for back pain or labor)--not to not get them, but to take the care with their symptoms after that medical doctors aren't. So, if you've managed to make it to the bottom of this long-winded diatribe, I hope your ears perk up if you hear of someone else with similar symptoms in the future and are able to help someone circumvent the years and interventions it took me until I found an answer, if not a solution.