Help Beth with Debt From Chronic Disorders

Beth Stevenson is organizing this fundraiser.

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You probably know me and my almost decade long medical journey. If you don’t, or don’t know it all, then here we go.

I was diagnosed with Chiari Malformation 1 at the age of 8. It was an incidental finding but I suffered from migraines at a young age. The bulk of the story begins in 2015 when I began getting debilitating upper back, joint pain, and neck pain; pains to the point of tears and being bedbound. I saw rheumatologists, physical therapists, neurologists, but no one could pin-point the exact cause. I had markers for an autoimmune disorder and was (improperly) diagnosed with Lupus. 2 years of steroid use didn’t help much.

I then began having bouts of disorienting tinnitus, extreme pulling pain behind my eyes, burning & aching neck and head pain that made smashing my head against a brick wall sound like a break from the level of pain I was in. I had an emergency hospital stay after having difficulty walking in mid 2016. Tons of MRIs were done, blood test after blood test, but no doctor could figure it out. I’d nearly pass out from simply standing up or standing up longer than 5 minutes. My feet and legs would turn mottled and purple from blood pooling. Meanwhile, in late 2018 I had to have a hemmorhoidectomy, which is a horribly unpleasant surgery that has one of the most excruciating recoveries. Thanks, pregnancy and hEDS!

My mom brought up my Chiari diagnosis from childhood and pressed me to ask my neurologist about it. The neurologist confirmed I did have a brain herniation of 7mm, but told me I was just anxious and to do yoga. Uhh, no? Meanwhile, a cardiologist scheduled a Tilt Table Test for me to rule out or confirm POTS (postural orthostatic tachycardia syndrome). Within a minute of sublingual nitroglycerin, I passed out and had a seizure. POTS was confirmed.

I sought out the one Chiari specialist in CT and within 5 minutes of speaking to him, he confirmed my head and neck pain and intense headaches were from blocked cerebral spinal fluid around my cerebellum. I needed a decompression surgery and laminectomy, which is removing bone from the posterior fossa in order to give my cerebellum room to let the spinal fluid flow and removing a portion of a vertebra called the lamina. The surgery occurred in June of 2019 and was a success!

From June to September I noticed a decrease in my symptoms, but by September 2019 I realized the excruciating neck pain hadn’t resolved one bit. I did my own research and found the Chiari Center at Weill-Cornell in NYC. I was accepted as a patient and my neurosurgeon highly suspected I had Craniocervical Instability, and my Chiari 1 was reassessed to be “Complex Chiari 1.5” He had me tested by a geneticist for Ehlers-Danlos Syndrome and had me do a trial of a hard collar to see if a skull-C3 fusion would be successful. Well, I was diagnosed with Hypermobile EDS (hEDS) and my collar trial showed that fusion would be successful.

In October 2020, I had a 6 hour long posterior cervical fusion surgery. Healing went well, I was released home after 3 days in hospital. Right away I knew something wasn’t right; I couldn’t swallow anything thicker than oatmeal without choking. I went a month eating pudding, soups, ice cream, and anything mushy and liquid. November 2020 I was brought back to Weill-Cornell for another 6 hour revision surgery. Upon recovering and being brought to my hospital room, I ate a sandwich with success! A 5 day hospital stay ensued. From November 2020 to September 2022 everything was going well, minus the perianal hematoma 3 inches long that developed on Mother's Day 2022, due to who knows what, that required surgery to remove and create a permanent drainage pouch, called “marsupialization”. Another medical debt hit.

In October 2022, I noticed my pain and muscle spasms were coming back but this time only in the back of my head. Certain spots triggered severe nerve pain and my neck tensed up from muscle constrictions. I shook it off until May 2023, when I went back to Weill-Cornell. My neurosurgeon recommended shaving my hardware screws down and exploring the area. June 2023 brought on a 4th surgery…but not really. I had a failed intubation due to my neck fusion. They tried for an hour and a half to intubate me without success and they called the surgery off. I needed an Awake Fiber Optic Intubation. Yes, an awake, ram tubes down your throat intubation that I will need anytime I need general anesthesia for the rest of my life. I was terrified. 3 days later the surgery happened and the awake intubation was a success. Hardware was shaved down and 2 neuromas (a benign tumor of bundled nerves) had grown and was being irritated by the screws.

I was diagnosed with TMJ this year, which is a whole new adventure that I’m struggling to begin since no oral surgeon wants to see someone with Ehlers-Danlos Syndrome since it is a connective tissue disorder. TMJ is very common with EDS. My only choice right now is to travel down to NYC again to see an oral surgeon knowledgeable in EDS, but that will all be out of pocket expenses.

I still have days of bad pain and muscle spasms. I see a pain management doctor every month. It will most likely be years, or even the rest of my life, with managing my EDS, Chiari, POTS, and instability.

This is why I am making this GoFundMe. I have back debt, current debt, and future debt. This debt is preventing me from building my credit, save up for a house, and put money aside for any emergencies. It has taken me a lot to decide to make this, since I am someone who wants TO help instead of BE helped. I don’t expect my goal to be met, but anything to help me take care of medical debts and debts caused by having to choose between paying a monthly bill or a medical bill going into collections is appreciated.

I am on payment plans and I make too much yearly to qualify for financial aide. I’m swallowing my pride and hoping I can ask for help from everyone, just this once. If you want a custom fiber art piece in exchange for a donation, I will gladly do that!