Originally Posted by Casehead
This thread is old but I know that people will pull it up on a search engine and come looking for it, so I thought that I'd throw in my two cents.
I had decompression surgery with a c1 laminectomy and duraplasty almost one year ago to the day, on October 17th 2008, after ten years of symptom progression. My surgery went well, I was home within 3 days, but the week after the surgery my incision started leaking CSF. They tried restitching the outside twice, but it would always start leaking again, so on October 31st I reentered the hospital to have a lumbar CSF drain put in to drain csf and lower the pressure so that my incision could heal shut. It was very unpleasant, to say the least. Then, after the drain was removed, I had horrible Chiari like headaches, and it turned out my spine was still leaking from the hole the drain left. I then had to go in for a blood patch, where they inject blood into your spinal canal and it clots and plugs the hole. Unfortunately the first one failed and it was January before they could stop the leaking. I was also told the lumbar drain left a crapload of scar tissue in my spinal canal. I also then found that I had a fluid filled bump in the back of my head which turned out to be a dural patch leak, but luckily it resolved on its own over several months.
Since then, I've been trying to get back to normal, but recovery is different for everyone, especially those who have complications. No one should expect a seamless super fast recovery. The truth is, the surgery does not really FIX you. It just stops you from having further progression of damage to your nervous system. Very often some symptoms will remain, and others will come and go over the rest of your life. Some people develop what they call
psuedotumor cerebri, which is basically just a fancy way of saying that you have the symptoms of a brain tumor without actually having a brain tumor. And then there are the lucky ones who magically are 100% better after the surgery, but these are usually people who did not have a lot of damage caused prior to the surgery. As I had symptoms for ten years leading up to my final diagnosis, I had a lot of time to incur permanent damage, and that damage doesn't all reverse itself.
Most of all people need to understand that fact: what's done is done, and some things just won't ever go away. I still have pain and a constant headache, discomfort, fatigue, etc. I am in pain management for the pain and use a duragesic 75mcg patch, and 4 10/325 percocet a day for breakthrough pain, sometimes more, sometimes less.
But don't forget what you do have: if you have symptomatic Chiari malformation, there's a good likelihood that without surgery you WILL become partially paralyzed, and often once that starts, once again, what's done is done. And those of you that are dealing with life after surgery, remember that. You're one of the lucky ones. No matter how hard (and painful) it can be, you will not have to live out your life in a wheelchair, and that is a gift.
To all you "zipperheads" out there, keep on fighting the good fight. Don't give up on yourself. Don't let despair ruin what you have left. Some of us will never be "recovered", but we have this life and we still need to make the most of it. And that means coming to terms with your limitations and working with them.
Good luck to you all.