— A guest blog by Anomie Fatale —
The only thing scarier than having a medical condition is having one that most doctors don’t know anything about. We try to assure ourselves that modern medicine has advanced to where all conditions are known and treatments have been safely tested. We don’t want to think about how we might actually be those test subjects. Sometimes the only way doctors make us feel safe enough to undergo their treatments is to leave out the dangers of the unknown. Sometimes they even leave out the negative effects that are known.
I have Ehlers Danlos Syndrome, a connective tissue disorder, and Chiari Malformation, a herniation of the brain. Doctors didn’t know there was a correlation between the two until the early 2000s and the specialized surgery for EDS type Chiari was invented a few years later. I had my cranio-cervical fusion in January of 2009 to treat symptoms that had started the previous year and had progressed to where I was losing consciousness and heart rhythm. The surgeon’s assistant told me I would still have most of the range of motion of my head after they put the rods in. I woke up with my head fused solid in place and downwards. The angle of my head was fixed so unnaturally it was hard to talk; I could only open my mouth about half an inch. Confused as to why I couldn’t move my head at all, the surgeon explained later on that it had been necessary to fix my head solid in place with bone struts. The original way they had done the surgery, and explained it to me, the rods were breaking on people with movement. I could not sue on the grounds that it was experimental and it had saved my life.
Getting the fixed fusion to be livable took letters from a maxillo-facial surgeon and my dentist saying “This should never be done to a human being.” My back teeth were rotting out because I couldn’t open my mouth to brush them. A different surgeon from the same research facility took on the greatest surgical challenge he had ever faced: completely redoing the fusion rods so at least I could open my mouth. He told me the risks were high because he had to break up bony-growth right over the top of my brain stem. I told him I was a singer; it was worth risking my life to have the ability to sing again. Because of my case and one other, surgeons now put the bone struts on the sides of the skull rather than right down the middle so they can be redone if needed without serious danger.
Recently (May 2018) I had to undergo another neurosurgery related to EDS. The veins in my brain were narrowing, and it was deemed necessary to put in stents to keep them open for blood flow. The surgeon who put them in told me the major risks of the surgery, but not the side effects of the stents. For months I was incapacitated with dystonia (involuntary muscle movement) and extreme nausea. Dehydrated and sleep deprived to the point I was hallucinating, I ended up hospitalized in June 2018. None of the hospital staff had ever seen someone with stents in their brain (it’s usually something they put in the heart), so they had no idea what was wrong with me. The surgeon did not tell them that was what was wrong; he even emailed me saying “That doesn’t sound like the stent.” Months later I was stable enough for a follow up visit with him. He told me then that it was something some of his patients had experienced after stent surgery, and that he “usually mentions that.” I have both the emails and the recordings that contradict each other, but I cannot sue because the recording was obtained without his permission. I considered reporting it to the American Medical Association, but he’s one of the only vascular surgeons willing to take the risk and do these types of things for people with EDS. My complications are nothing compared to what someone will go through without any help.
I wrote a song about it recently calling myself a “carbon sacrifice” because that’s exactly how I feel. I’m not a person; I’m just a test subject. I’m a failed science project. The only reason it matters if I die is so they’ll know they have to do it differently for the next subject. That’s not true at all, but those are the thoughts that come into people’s minds when they are put through things like this. It’s dehumanizing. Every time I undergo an experimental treatment or surgery I have to take off my identity and hang it up in a locker somewhere to get back only if I end up okay.
The only thing harder than having to be a guinea pig was having to be a medical expert. Most doctors know very little about my condition, and only the surgeons that have performed my surgeries understand them. In case of medical emergencies, I have to keep a sheet on me at all times explaining my surgeries and giving my specialists’ phone numbers. Most of the times when I’m in the ER and conscious I have to explain everything to doctors and nurses that have never even heard of what I have. I keep medical imaging pictures on my phone to point at for quick references. It’s exhausting. People get paid for giving lectures with way less information than what I have to give out just so the hospital staff doesn’t accidentally injure me.
When I’m having problems, a lot of the times hospitals and my primary care team are clueless. For example, I was having shortness of breath spells and hives; they thought it was anxiety. My EDS support group online immediately recognized it was Mast Cell Activation disorder, part of EDS. Currently I manage that symptom with Benadryl. It’s risky to trust the internet for medical information, but sometimes it’s completely necessary. I strongly recommend asking specialized support groups rather than a Google symptom search. Unfortunately many people with EDS are undiagnosed. That’s why it’s important not only to become an expert on your misunderstood condition but also an advocate to get the information out there for those who have the same problems but have no idea why.
I am proud to say that I helped the next generation of people with my condition. I have suffered greatly, but because I have, someone else will have better care and quality of life. As angry as I am at the doctors who didn’t tell me everything, without them I would not be alive or have had many of my wonderful life experiences with music, love, family and friends. I am still angry, but I’m alive and singing to express that.