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.


Hi Emily Alice/

I can completely understand the frustration you have...God Bless you..being a single mom is VERY HARD...Glad you have close family near.

Oh..Please..you call that a RANT....you should read some of mine!!! Your's was mild!!LOL You were simply telling us whats going on.

I take from you post ..that your last surgery was only 5 mths ago....I know it must seem like a lifetime....but..5 mths is not long....In my own experience (had decompression a bit over 4 yrs ago)..I too, had weird Sx's and the fogginess...but they did go away...

My NS told me that since my CSF was goofed up for so long ..it was going to take quite a while for the brain/body to adjust to the corrected flow. In my case, he was right..took some time ..but...it improved...doesn't help when you are suffering though. I know.

Have you called your NS to inform him of this? I suggest you should.....never hurts to tell him.

Please let us know how you are doing.