Just getting back

Hey everyone,

Just wanted to let you know that I haven't been ignoring you all. I told you I would post after my surgery to let you all know how it went. So I'll start at the beginning.

My first surgery was august 1st of this year. They went in, cut a piece of my skull, my first vertebrae, and my brain covering out, and sewed a patch into my Dura. I was home for 2 days, and the brain covering patch they sewed in had blown out and that I now had a rare staph infection in my brain, coagulase negative. My second surgery was on the 9th of august, to repair the CSF leak caused by the blown out Dura patch and to drain any infection. I was in the ICU for 5 days, then discharged home with a PICC line for IV Vancomycin every 8 hours for 6 weeks. I went back to the hospital a week later, and it turned out that the replacement patch they had sewn into my dura blew out as well. I was re-admitted on the 20th, and sent to surgery on the 21st. The neurosurgeons (that's right, more than one), were able to open me back up, but none of them could get a drain into my head to divert my CSF from the new patch so that it would have more time to bond. Evidently they kept me under as long as they could, but when they finally did bring me back up, my heart rate stayed in the 30's and 40's, for four days. I don't have any recollection of these four days, so I only have what my family and what my doctors have told me to go by. They were able to successfully put in a lumbar drain utilizing the radiology room, which is what saved my life.

All in all, I spent 24 days between August 1st and September 2nd in the hospital, 13 of them in the ICU, and I ended up having a day where the surgeons were telling my mom and dad to contact the rest of the family because they thought I was going to die. Obviously, I am not dead, thank God for that. But this has been hell. I'm currently suffering withdrawals from the sheer amount of Dilotid (or however you spell it) they gave me on my most recent admission to the hospital. 3mg every 2 hours. I have to be hooked up to an IV pole every 8 hours to take my antibiotics. And I am still on a pretty heavy regimen of Vicodin and Valium, which I'm hoping I will be able to kick, but have no guarantee's that I'm ever going to be able to stop taking them because of the damage that has been done to my neck and shoulder muscles that were cut and reattached 3 times within 20 days of eachother, and the damage that has been done to the rest of my body. The only thing I remember from those 4 days after the surgery is the nightmares. I dreamed about my own funeral, among other things.

My point in letting you all know this is so that everyone who reads this can understand that this is not a "safe" surgery, bad things can, and do, happen, and that it's not something to be taken lightly. Consider this a warning as to what opting for a Chiari Decompression can do to you. Not everyone has an experience like mine, don't get me wrong, there are many people who get decompressions that go flawlessly. Just know that it doesn't always happen flawlessly. I am now terrified of the hospital, I can't even think about it without shaking. I just don't want anyone else to get blindsided like I did. Enjoy every second you have with your loved ones, spend every spare moment you have with them. You never know when you may not get another chance.

I am so sorry for all you have been through…thank you for taking the time to let us know what is happening with you.
It is important for us to share our experiences with each other…the good and bad…you were so right about surgery…no surgery is safe in the fact that complications can happen, like in your case.
Please let us know how your recovery is going…let us know if we can help in any way.
Take care,

I'm so sorry to hear what an ordeal you've been through! My thoughts and prayers are with your continued recovery!

I wished you would have told us you were having the surgery :(

That must have been really stressful for you and your family...especially your wife! How is she holding up through all this? Tell her she is in our thoughts too. Get well soon and keep us updated!!


What did they use for a Dura Patch & how are you doing now?

Our experiences are somewhat similar. I knew that the experience I went through was bad but had no idea how much it had affected me until last week when i went for my one year post op check and had a full blown panic attack at the sight of the hospital. It totally knocked my socks off since I have no memory for 2 months post op......guess our subconscious works in mysterious ways. Hope you are doing better and healing well. You are in my thoughts and prayers.