My name is Melissa Burner. Many of you may already be familiar with me, my story, and why I'm asking for your help. The TLDR version is: I'm having yet another neck surgery, hopefully the final one, and it's going to be major. To find out more, continue below ...
Several years ago, I was diagnosed with a strange illness called Ehlers-Danlos Syndrome. It's one of those illnesses that affects every organ and tissue in your body, yet often doesn't show any outward signs -- an "invisible illness." It's a genetic disorder that causes collagen to be made improperly, which is a big problem because collagen is one of the most important proteins in our connective tissue (the stuff that holds our bodies together). Think about the difference between the fabric your jeans are made from versus a cheap t-shirt: much stretchier, quite flimsy, the stitches are already coming out ... it won't stand the test of time. That's about how EDS works. Your ligaments, tendons, blood vessels, organ walls, your skin, the protein in your bones ... none of it is strong enough to do what it's meant to do.
Needless to say, EDS causes a great many problems, the worst of which might be the constant joint dislocations (and the pain that comes with them). They pop out of joint all day, every day, without any warning or reason sometimes. This is why I'm having surgery again: despite our attempts to fix it, I still have severe cervical instability, which means my neck bones are dislocating multiple times every day, and it's causing irreversible damage to my spinal cord and the nerves that control my arms, hands, organs, and the feeling in my skin.
My neurosurgeon, Dr. Fraser Henderson, works miracles. I'm serious when I say this. It's like hiring Ace of Cakes to handle your birthday. You know he's going to do a fantastic job no matter what. Dr. H works almost exclusively with the EDS population, which is a wonderful and lucky thing, because we require a lot of special care especially when it comes to surgical and post-surgical care. There's so much that can go wrong, and we're lucky to have a doctor that actually does everything he possibly can to make sure we get the treatment we need. He's restored so much of what I thought I'd never get back, which is why I trusted him implicitly when he told me what we need to do next.
He looked at my new scans, mumbling witty cynicisms in his merry British accent. He noted out loud the improvements my other operations have made, giving me the barest hope that maybe I wouldn't need another one, yet filling me with that strange familiar dread that maybe there was nothing more that could be done. He spent a minute more poring over the MRI, concern on his face, and then told me what we needed to do. It shocked me. He recommended that I have my entire neck fused.
If you think this sounds like an extreme solution ... it is. But the goal is to try to fix everything at once, so I can stop coming back every few months for yet another major neurosurgery. The cool thing about this one is that he'll be doing a biologic fusion instead of an instrumented one like the others. This means he won't be using any titanium to achieve the stabilization. Instead, he'll take bone from the bone bank (they don't even charge bone interest!), crush some of it up, combine it with marrow from my hip, make a paste out of it, graft all of it into place, and then allow my body to form its own new bone. (I've compared this process to making Oreo cookie pudding ... while the accuracy of this analogy is questionable, the visuals are definitely more palatable.)
Each time I've had one of these spinal surgeries, the only thing that's enabled me to do so was your generosity. My insurance company isn't being helpful, and is even more uncooperative in light of the recent political upheavals. I don't know why these things have to be so difficult, especially for sick and disabled people. I don't entirely know what's wrong with the system or how to fix it. But I have no choice; I am sick, I am miserable, I can't wait any longer. And I can't afford this surgery, much less the costs of the hospital stay, travel, lodging, and making up for my caretakers' lost days of work.
I can't wait to be back where I was. Hiking every week, dancing like a doofus, creating meaningful things for the world and the people that live in it. I can't wait to finally contribute again and show my gratitude to every person who has helped me. I don't know how my future will look; I'll be sick like this for the rest of my life, never knowing what major medical intervention will be needed next, whether I'll be able to pay for that treatment, and never knowing whether I'll be believed or not simply because I am young and my illness is invisible. But I am hopeful, and I am grateful.
If you'd like to ask me questions, please do. I've posted several Health Updates on my Facebook if you'd like to learn more about my journey. If you're able to help, in whatever amount you can, my family and I would appreciate it more than any words could express.
- Kim Doyle
- Linda Liscum
- Katelyn Wagner
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