Travel expenses for surgery!

Update: The state sided with me in their independent medical review, which means that my insurance has to pay for my surgery! I've never been so happy as when I got that news :) Unfortunately, I still have quite a few expenses for travel: airfare for two, a hotel in NYC for 10 nights, an expensive brace that I need post-surgery, and my copay to the surgeon. I'd also like to eat while I'm there, lol. I've drained all of my life savings--my ENTIRE life savings--just to get to this point, so any donations to cover travel would be greatly appreciated! Thank you so much for making this possible <3

TLDR: I have a congenital spine defect that effects less than .01% of the population. My insurance did not approve a surgery that could treat my spine condition and save me from debilitating pain. Please help me to raise money for this surgery so that I can get out of this awful pain, get my life back, and become an advocate for chronic pain patients and raise awareness of Bertolotti’s Syndrome. 

I’ll keep this as short as I can: essentially, my life has been a medical nightmare since February of 2022. Over the course of one week in early February last year, my life-long back pain went from annoying and uncomfortable to excruciating. The pain was so debilitating that I sobbed on my way to work and frequently had to leave early or miss whole days because I couldn’t walk. I took as many days as I could off work, feeling guilty because as a teacher my absence meant that my students had disrupted lesson plans.

Unbearable pain went on for months. I ran out of sick days. My in-network doctors, to my horror, were dismissive and said that there was nothing wrong in my images, even when they saw that I couldn’t walk due to pain. So, I asked for more detailed imaging; they refused. I asked to be referred out to specialists; they refused. I asked for a note for work so that I could take time to figure out what was wrong with me; they refused. Some have even openly laughed at me.

Enough was enough. I paid out of pocket for a specialist and flew across the country to see him, even though he was out of network. His diagnostic shots proved that I do have a very rare, very painful spine deformity: Bertolotti’s Syndrome. And even better, this surgeon had developed a technique to correct it.

Bertolotti’s Syndrome in a nutshell is a spine deformity where a lumbar vertebrae is incorrectly fused with the sacrum. The real kicker is that there are four types, and only two of those types cause debilitating pain. Some people can have this abnormality without it ever causing them issues. But guess which type I, being the lucky duck that I am, ended up with? It is an under-studied, often-ignored condition that some doctors don’t even believe exists. It is right at the forefront of new research. I can't link an article here, but I strongly encourage you to research this mysterious syndrome and its effects.

Cautiously optimistic and feeling vindicated, I messaged both my PCP and my pain management doctor. I had found out what was wrong with me, and there was a treatment plan! All I needed was for my insurance to pay for the surgery. Just one-hour long surgery, and I would be off of these pain meds and back to work and back to my normal life.

That was nine months ago. My insurance has not approved the surgery, even though my in-network surgeons have only offered procedures to manage Bertolotti’s symptoms, not Bertolotti’s itself. These procedures have not even lessened the pain by half. It seems that they want to keep me bed-bound and on medications instead of fixing me.

I don’t want to get too bogged down in all the ways that my care went wrong, but I will say that this experience has opened my eyes to how neglectful insurance companies and healthcare systems can be. Did you know that physicians are not legally required to do their best to treat you? I didn’t, and I and countless others have been the victims of that mentality.

If I’m lucky enough to be able to get this surgery, I plan to advocate for patients’ rights and raise awareness for this debilitating condition. I feel sad for myself for my daily pain and extremely limited mobility, but I feel even worse for the people who have rare conditions that doctors have given up on who don’t have the wonderful support system that I have or have the ability to find an out-of-network doctor for a chance at being healed.

Thank you, from the bottom of my heart, for your help. If I’m able to get this surgery I will do my very best to pay it forward.

Please follow my journey for treatment:

TikTok: @emmasbadspine

Instagrame: @emmasbadspine