Hi Everyone,
I'm new to this forum (actually, any forum), and I was hoping to get some input from anyone who has suffered from complications post decompression surgery.
It all began 2 years ago, when I hit a tree skiing. I suffered a severe concussion, but bounced back pretty quickly from the accident. A few months later, I began having neurological issues that were pretty serious, and after going from one doctor to another, I was diagnosed with Chiari. It may have gone undiagnosed if not for the accident, but the herniation was made worse from the accident, and surgery was required.
I had the decompression surgery, as well as a duraplasty. Two or 3 months later, they had to open up my head once again to fix a leaking dura patch. Two months after that, the patch leaked once again.
At that point, I was diagnosed with hydrocephalus, and when the third surgery was performed they also placed a shunt into my head to regulate the high amounts of CSF fluid in my brain. The shunt drained into my belly, but after 6 months or so I was experiencing severe stomach pain and I had another surgery to revise the shunt so it would now drain into my heart.
That worked out well for a while, until the shunt began to malfunction at epic proportions. It would change settings on its own for some unknown reason, and over drain the CSF fluid. One month ago, the shunt was pulled out altogether.
To say I've been put through the wringer is an understatement..
I have always remained optimistic, and it's what has gotten me through some really tough times. I believe that when we go through through such trials and tribulations, there are valuable lessons to be learned both about ourselves, and our loved ones. I have always had hope.
Now, I feel like I'm just hanging on by a thread. My headaches are intense, and always present. My quality of life is greatly diminished. Right now I'm on a low grade vicodin, which helps for about an hour, and then the pain returns. I have plans to travel extensively this summer, and now I'm not so sure I can handle it.
My neurosurgeon just recently referred me to a pain specialist, and I see her Wednesday. I'm not sure about what to expect.
Honestly, I'm not even sure why I'm writing this. Maybe I'm grasping at straws, hoping somebody can provide me with a miracle, or words of wisdom.
Is there anybody with a similar story? Can anyone offer suggestions about a certain medication which has worked for them?
I fell desperate, and thats so out of character for me.