It has been quite a while since I posted an update here. First of all I want to thank all of you who have responded and wish well to all of those who are seeking answers here. My story began with the bleeds and became much more complicated. As I said in my first post they were considering a re-coiling of the aneurysm.
My doctor and I opted instead for a clipping. Had I only known I would have definitely gone with the coiling. 7 hours into the surgery they gave up, the aneurysm was wrapped around my brain stem. The doctor told my husband post op that he didn't know if I would wake up, or what condition I would be in if I did. Clearly I woke up! My husband had snuck into recovery and I woke up to him standing over me. I tried to talk to him, but he says I didn't make any sense, I thought I did.
Anyway, I woke up without much in the way of deficits, and the usual pain. The worst was the ringing in my ears, I couldn't hear for weeks, and the change in my voice. They never did explain that to me. We noticed within a week or so that the swelling in the back of my head wasn't going away, and I couldn't stop throwing up. The next thing I knew we were headed back to the hospital, viral meningitis and a pseudomeningocele, in other words I had a spinal fluid leak due to the craniotomy. They did a small surgery to try to repair the leak and sent me home.
Two weeks later I was back and worse, now I also had pneumonia. They did another surgery to attempt to fix the leak and replaced my shunt due to an infection. Now I had holes everywhere, the back of my head, the top of my head, my stomach (for the shunt), and a 10 inch incision in my leg where they removed the fascia from my thigh muscle to repair the pseudomeningocele. Luckily this surgery was successful in repairing the leak, but I developed a fungal infection in my brain and a staff infection and had to have a picc line for 4 weeks when I went home.
My recovery was very slow. The first time I walked around the block (about half a mile) I was so proud. I went to work in a family member's clothing store in February of 2008. Working has shown me how little I have really gotten better. I am tired all the time, I can't think straight, I am scared to death that I will have another seizure or another bleed. I am terrified of dying and leaving my family. I don't go a day without a headache. For the most part I can do things, but after I exert any effort I have to rest, it feels like a bomb going off in my head. This is also true when I sneeze, cough, or bend over to do anything.
I dropped down to part time about 3 months ago, it helped, but I am thinking not enough. My husband suggested the other day that we should think about trying to apply for disability. We are going to talk to the doctors to see what their opinion is. I just can't keep this up. I hate the thought of being a drag on society, but I can't force myself to do things that cause me this much pain.
Anyway, I am sorry for again going on and on I just needed to vent a bit. If anyone has any insights or advice please feel free to comment. Again, thank you all for your concern and your advice. I am hoping to get into better spirits soon.