Cover Surgery and Medical Costs

For those who know me, you know that I've spent decades trying to understand why I was in so much pain, why my body didn't quite function like others, and what was the source of my many, seemingly random ailments. We discovered a few years ago that I have Hypermobile Ehlers-Danlos Syndrome, a group of rare disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues.

Over the last few years, my symptoms have rapidly accelerated to the point where I have to use a cane every day, and I have limited mobility. If I push myself too hard, I am bed/couch bound for days and have a wide variety of neurological, cardiological, and nerve-related issues. These symptoms have put me in the ER time and time again. Many of those visits have been traumatic and required extensive therapy and psychiatric support, all of which are out-of-pocket due to the overwhelming demand for mental health services post-pandemic.

Earlier this year, my doctors finally found the source of most of my major symptoms, particularly when it comes to mobility. They determined that I have Tethered Cord Syndrome, and the only way to address it is via surgery. Tethered Cord Syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. Symptoms include excruciating back and leg pain, muscle weakness, cramping in the legs, nerve damage to the lower extremities including the bladder, losing the ability to walk, migraines, pulling on the spine leading to increased symptoms for cervical cranial instability (which I also have), and much, much more.

hEDS only officially became a diagnosis about 10 years ago, and as more and more people become diagnosed, more and more doctors are refusing to see hEDS patients, because they're so complicated (treatments and surgeries have to be handled differently because of how our bodies respond). Simultaneously, hEDS experts have gone out-of-network for many patients. Insurance companies won't pay out their rates, especially given that they have to spend 2-3x more with EDS patients compared to patients without the disorder.

My neurosurgeon, who is one of the only doctors in the world qualified to do this surgery, is one of those Out-of-Network doctors. Those surgeons who were in-network (of which there were 2 in the country) had years-long waiting lists and required extensive travel to other states. Meanwhile, without this surgery, I will likely lose the ability to walk and given the rapid decline I've faced in the last few years, my doctors don't believe I have several more years to wait. Testing already shows significant nerve damage to my lower extremities which I may not be able to recover from - the surgery is intended to stop any further decline, but I'm not guaranteed to improve. I will likely need several more surgeries, but this is the first major step in getting to a less painful baseline.

Between the surgery, my other doctors who are not taking insurance, my medical bills from past ER visits, and the medical equipment needed for post-surgery recovery, I am looking at an overwhelming amount of medical debt (more than my goal of $15,000 but I'm hoping to offset the other costs through other means). My family just pulled through difficult financial circumstances due to many other things converging and going wrong at the same time, including a house fire and house flood, and I'm doing whatever I can at this point to help us stay afloat.

So, dear friends, I am asking for your financial help in whatever way you can help. Every small contribution helps.

Thank you so, so much from the bottom of my heart.