What they don't tell you

Hi all my fellow survivors. I think I need to vent. It is now nine months after my decompression and five months since my shunt was placed. Sometimes I feel like I am losing it and today is one of those days. My three year old and I live alone, with family close by(thankful), while my husband is out of the country for the next fifteen months. Although I am doing better (relative term), the aftermath of Chiari is just downright scary. I have days that are "normal" to me that would be a healthy person's nightmare, and I am thankful for those days. Other days or weeks on end, I suffer from chronic headaches. Go to bed with a headache, wake up feeling like a bomb went off inside my head. This I can make manageable. Other days the weird stuff takes over. I wake up okay and a few minutes to hours later, I suddenly feel like I am in between worlds. My eyes will jerk back and forth almost like seizures. My balance becomes suddenly horrible, when moments before it was fine. I crash into things and generally forget what I am doing. For example, putting my coffee in the fridge and the creamer in the microwave. The scariest part is the visual problems and feeling like at any moment I could pass out. Almost get that feeling of "this is it, the end of the world." It is that scary. In a few weeks I am going to a headache clinic, but i am not really sure what to even tell them. Still waiting to hear about my SSD case. Please pray that it goes through. All of these things were not mentioned to me, so I have a hard time coping with this is the way life is going to be at 30 years old. Sorry for the rant, I just needed to get it off my chest.

EmilyAlice

Beeba,

I went at the end of August for ICP monitoring in the ICU, the one where they drill a hole in the top of your head. Yikes! The pressure was slightly low so they adjusted it up a notch. We cant go up any further, because for some reason that makes it too high and I begin to develop papilledema. I had my bp checked once at the hospital, sitting, lying standing etc. The cardiologist did say that my BP would drop and HR went up, but he wasnt sure it was anything to worry about. There are so many things that could be causing this. I have started a list, feel free to add to it, of things to ask the neuro specialist. POTS, cervical instability, ED, maybe the arachnoid adhesions are reforming, bovine graft problems? I have no idea.

EmilyAlice