I’m a 30 year old male who was diagnosed with Chiari I Malformation with .5 centimeters from the MRI. For the past 5 months I’ve been experiencing weird headaches, this strange aching pressure in the back of my skull. I also noticed weird numbness in both hands, like they fell asleep. I went to my doctor for the headaches and didn’t even mention my hands because I thought they were unrelated.
Then I received my diagnosis after the MRI and have been learning about this horrible condition. Are these really my only 2 options: live with headaches for the rest of my life, or, it gets worse and then I have to have surgery? I can’t, I just can’t imagine living like this forever. I barely made it 5 months, how can I do it for years?
I’ve already dealt with depression, anxiety, etc before this. Maybe I’m just weak, but I’d really appreciate any and all tips you might have for dealing with symptoms. Anything that could help me emotionally as well would be so nice of you.
Sorry for being a downer, I just never thought this would be my life.
I’m so sorry. First, you need to get a full spine MRI to check for a syrinx, which can cause permanent damage to your spinal cord. A syrinx makes it more likely that decompression surgery will be required in order to prevent other neurological symptoms and paralysis. A syrinx will generally shrink or disappear after the csf flow is properly restored. Second, get a second or even third opinion from a true chiari specialist. Not at a "chiari clinic ", but from one of the actual tried and true chiari specialists. Chiari does not like to play alone - there are many comorbid conditions that may be lurking. It’s better to know about them before you have surgery. Third, join a fb group called “Chiari Malformation - WTF” (worth the fight). So many resources pinned to the page - along with names and contact info of all the specialists. Pretty much any question you can think of has been answered on this site. Also, the admins are professional, informed and quick to respond. I wish you the best of luck!!
Hey Drizz, I’m a 22 year old male. I was told in May of 2016 I had chiari. I’m from a small town in Iowa and the doctors here aren’t really up to speed with a lot of conditions and mainly just want their checks. I was in a car accident and a few days later my head was hurting, typically in the back and sometimes it’s work its way to the front. I had my first MRI and when I got the results I was told the basics of what chiari is and told to go an hour away to a bigger hospital with a better MRI.
Fast forward about 2 months. Seeing this specialist after my “better” MRI he tells me more info of what chiari is, not necessarily my chiari condition but in general. He wanted a few more MRIs of my head and one of my neck. When all results were done, I called and asked for the results mailed to me, well they wouldn’t. Made me come for an appointment for my results. But get this, he told me that day exactly what he had told me a month and half prior at my first appointment.
So in September I sought out another specialist who I had seen a few times in Rochester, MN. I, too, was told that it’s either be: deal with it and some days will be better than others, or, have surgery and that may fix it. It was about a 90% that it’d fix it. They also stressed how there is 100% no cure, not even surgery.
I had my surgery on Halloween of 2016 and let me tell ya, first couple weeks were the worst but then it got better. Well, that is till recently. Recently I have been seeming to get those headaches at least two to three times a week. Don’t get me wrong though, I’m glad I had surgery and I wouldn’t change it if I could.
Drizz
Do the Surgery because my neurosurgeon said that if wait I wait any longer there will be more neurogical damage. But she says if I do the surgery sooner the headaches will go away but no more neurogical damage because there will be a release of pressure of the CSF fluid going through my body. Best of luck.