Beyond frustrated

Ok I know in the past I have said how good my recovery has been. I had surgery in November and for about 3 months I was actually pain free I almost forgot what it felt like. But last month my pain came back with a vengeance, I thought it was menstrual until I still had it 3 weeks later. My NS sent me for another Mri and said there is nothing surgically wrong. And now I have to wait until mid May for an appt with a NL I had a horrible experience with my last one and had to look for a new one. 2 days ago my legs gave out under which up until that point I looked at my surgery as at least that got fixed now I’m wondering what was the point of the pain and limitations from the surgery. My husband has to be careful hugging as to not put to much pressure on my neck. I’m missing work because the pain is getting to be to much again. I only have 3 days of FMLA to last me until October when it renews because of my surgery. I hate that I have to be half ass at work because I’m in pain and nothing helps. I signed up for classes at school now I wonder if I should even bother I’ve dropped classes in the pass because of chiari and wasted money. I just don’t know what to do any more.

Elisa,

I just saw your post. I’m about to leave the house so can not make a long reply but I’m almost two years post op and your story sounds identical to mine. The first person with a case like me and I have been searching for a while now trying to figure out why I took a nose dive about three months after surgery. I will post my story in length tomorrow. I can no longer drive so my daughter is coming to help me with grocery shopping but I wanted to let you know you are not alone.

Nicole

I am also beyond frustrated. I had my decompression in 2004 folloed by many shunt revisions. The last one was Jan. 29. It has failed. I have all the awful symptons back. Seeing neurosurgeon o Monday to see what’s going on. Feeling hopeless.

Kalie I hope everything gets better for you. I always feel bad when I post everyone has bad stories and I feel bad because I’m not as bad as everyone else. But everyone on here is great when I comes support and never make me feel like I’m just being a pain.

I totally understand your frustration. I had surgery in 2008. Felt pretty good for 6 months than it all came back even worse because now most of my c1 was taken off. I feel like every year after trying everything I can possibly try it just gets worse and my depression gets worse. I go a week without showering. Ino longer cook dinner or clean. It’s just pain pain pain. Why can’t they figure out how to help ud