I had my first decompression surgery in Sept. 2011, after being diagnosed in June. My NS said that I decompressed as soon as he opened me up, so he didn't do the full surgery, he left the dura in placed, but removed the skull and parts of the vertebrae. A month later I sprung a CSF leak and had to have a lumbar shunt placed. Since then, my symptoms have become progressively worse. Now my NS wants to tie off (shut off) my shunt and give it a couple of weeks and see if it helps ease my daily headaches and possibly the progression of symptoms. If after a couple weeks it doesn't work, he wants to go back and do the decompression surgery over again, but this time do the FULL surgery, as well as, an exploration of the brain to see if there is something else going on.
Has anyone else had a lumbar shunt placed? Has anyone had it turned off? If so, was there a change in the pressure in your headaches? It has only been four months since my decompression surgery and I going on my 3rd surgery. Just not ready for anymore. *Sigh* But I continue to fight this with a smile as I am stronger than my disorder.
I have a shunt, but mine is a VP shunt that goes from my head and drains in my stomach. Mine has a valve on top of my head that can be adjusted from the outside without surgery. A machine reads the settings and can either lower or raise the shunt drainage. I had a lumbar drain temporarily when I was in the hospital. They were trying to decide if a shunt was what I needed. I do know that I had terrible headaches and was nauseated when I had the lumbar drain. When they took it out and I got home, I continued to be sick for about 11 days before my husband took me to the hospital. It turned out that the lumbar drain actually caused tiny tears in my spinal cord that was allowing the CSF to leak. I had a blood patch done and that took care of it right away. A couple of weeks later, I had the VP shunt placed.
It might be worth a try to see if your headaches get better once the shunt is shut off. Hopefully, you will feel better and they can remove the shunt all together. Maybe your CSF is now on the right flow pattern and you no longer need the shunt? Idk. Don't even think about having to go thru the decompression again until you get thru this lumbar stuff. One surgery at a time, right?
Good luck, hon. I hope you feel better soon. Please keep us posted.
My shunt also has the valve that you can adjust on the outside, but I guess you can’t turn it off that way. I for sure am only thinking on step at a time. I am very optimistic that this will be the step I need and will help get me back on my feet. The surgery went pretty well, got a little fluid in the lungs, but otherwise all was good. Am home and resting. Thank you all for the positive thoughts and well wishes. I hope everyone is having a pain free day! =)