FROM A SUFFERING OHIOAN (we fight for people like this, please join our fight):
I wanted to take a moment to say thank you for your efforts, and ask you not to give up.
I am a 37 year old mother of three, step-mother of another three, living with a condition called Chiari Malformation Type 1. What this means is that my brain doesn't fit in my skull, and presses on my spinal cord, blocking the flow of cerebral spinal fluid. At this time, the only "treatment" is decompression surgery - they remove the extended brain tissue, carve away some skull, stretch the dura to make room and close us back up. The odds that this will work and make us better is only about 40%, while there is also a significant chance it will make us worse or there will be complications - and most people who have decompression will need it repeated at least once in their lives, each time risking further damage.
We are given medications like percocet and vicodin, and told to take ibuprofen and moderate Tylenol. I cannot take vicodin because it makes me violently ill, and my body had created a tolerance to the percocet...it no longer works at all, instead making my headaches worse. On a bad Chiari day, like the one I had yesterday, I almost can't think for the pain no matter how much medication I take. Nothing makes it stop. I want to cut my head off to stop the pain, and of course, I can't.
Some Chiarians like me have tried medical marijuana and swear by it. It doesn't have the negative side effects of all of the medications that doctors try to put us on, but it does alleviate pain. Most don't smoke it, they cook with it or take pills, but the difference in their lives since they have begun using it is night and day. Some live where it is legal, some don't but say it is worth the risk. With the number of kids I have, I can't take the risk of not having it legally....so I can't even try it to see if it WOULD help or work. So there's this miracle out there that might help my life and at the very least wouldn't hurt me like the meds that my doctors can give me bottles upon bottles of...not a cure, but a legitimate treatment that could take this horrendous pain away, and I can't even try it. It's so unfair, it's so devastating...it's been proven effective, but I can't touch it.
Please don't stop trying. People like me need you, are counting on you. I don't know what I can do because of my condition, but if there's something I can do - even speak on behalf of those suffering chronic pain conditions, I will. Just keep fighting.