Here is a very brief overview of the conditions I have:
Chiari Malformation: A skull malformation. My skull was formed too small, causing pressure in the back of my head, and a blockage of fluids that should flow freely in and out of the brain.
Ehlers Danlos Syndrome (EDS): A connective tissue disorder. The main things affected in me are my ligaments and veins. My ligaments are looser than they should be, causing certain joints to easily dislocate. My veins and arteries are also lax, making it difficult for blood to be pumped the way it should.
POTS: An autonomic dysfunction. My autonomic nervous system malfunctions, causing problems with all involuntary functions of the body. This causes difficulty standing, due to my heart rate and blood pressure not reacting properly to the effects of gravity.
Tethered Cord Syndrome (TCS): A spinal cord malformation. My spinal cord is anchored in place, not allowing for it to move freely within the spinal column.
Cranio-Cervical Instability: When EDS and Chiari join together, the skull-spine joint often becomes unstable.
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Symptoms:
Headaches--I have a constant pressure headache. This pressure sometimes reaches a debilitating level. I also get migraines and more acute, sharp headaches.
Nausea--Nausea can be caused when there is increased pressure on a certain part of the brain. It is often worse when I am upright, and relieved when I lie down.
Back pain--I have pain throughout my spine. This is caused by the tethered spinal cord and the loose ligaments holding my spine together.
Fatigue--I require a great deal of sleep. If I don't get enough sleep, my symptoms will worsen, leading me to return to bed and get more sleep. Basically, I am a slave to my body. If it wants more sleep, it will get it.
Digestive problems--Due to my autonomic dysfunction, I don't always digest food properly. I've changed my diet a great deal, but often, I still get terrible abdominal pain after eating.
Tachycardia/Low blood pressure/fainting--After standing for too long, my heart races and my blood pressure drops. Sometimes for no reason at all, my blood pressure gets very low, and I can fall into a state of reduced consciousness.
Heavy head--Due to the instability, I have difficulty holding my head up. This is very tiring and leads to severe muscle spasms in my neck from trying to support my head.
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Treatment:
I take medication to constrict my veins, in an attempt to help my blood flow improve. I also take salt pills regularly to force my body to retain more fluid, which can help keep my blood pressure up. Salt pills are also the only thing that helps when my level of consciousness lowers. I try to avoid pain medications, because I've been in pain for so many years, and I don't want to destroy my digestive tract. I treat pain with ice packs, heating pads, and lots of rest.
I've already had two major operations, but obviously, I'm not better yet.
In July 2002, at the age of 18, I had a posterior fossa decompression surgery. This involved removing part of the base of my skull and the back of my C-2 vertebra. I felt much better at first, but started to get worse again after a couple months.
In December 2003, the day after my 20th birthday, I had a cranio-cervical fusion. Titanium rods were bolted to my skull and screwed into my top 4 vertebrae. This was intended to fuse my skull in place atop my spine.
After that last surgery, I worked very hard to recover. When symptoms didn't improve, the doctors said that nothing else could be done. Then, I began to search online for more answers. This led me to have another set of MRI's. I sent these to my doctors at The Chiari Institute in New York. It was confirmed that I have an occult tethered spinal cord. It is also likely that I have a failed fusion.
I will be having a section of the filum terminale operation to de-tether my spinal cord. This should release the spinal cord and allow it to move freely.
Quite possibly, I will also require a revision to my current cranio-cervical fusion. This would reset the position of my head, allowing for greater stability.
