Update to Cyberknife: things you should know

For anyone out there considering the very new, bloodless, and painless Cyberknife procedure, beware of the steps you need to get there. Last week I had what is known as a Cisternogram. This is a procedure where you get a spinal tap first, some of your CSF (Cerebral Spinal Fluid) removed and replaced with an equal amount of contrast. Once the contrast is in, you are tilted forward on a table and the contrast rushes into your head (this is the first PAINFUL step). The next step is a series of CT scans where you are “attached” to the CT table via a special mask (this actually isn’t so bad). Once the scan is complete, you are sent back to a recovery area. I cannot stress this enough: MAKE SURE YOU LAY FLAT FOR AT LEAST ONE HOUR before you go anywhere. Since I had so much pain from the contrast rushing into my trigeminal nerve, I was directed to spend my recovery sitting in a reclined position. THIS WAS WRONG. The result of this was a spinal fluid leak resulting in a spinal headache. Look up “spinal headache.” It was not good. Sitting after the spinal tap put too much pressure on my spine and caused the leak. I ended up in the ER 48 hours later needing a “blood patch” (where you basically get another spinal tap with your own blood and it causes a clot preventing any more leaking). If you do end up with a spinal headache, the best thing you can do for yourself until you receive medical attention is lay as flat as possible.
The next step is an MRI…with contrast. I hope there is no reaction to that.
And finally, the actual Cyberknife procedure is in late February. That itself may be bloodless and painless, but beware of the steps to get there.
I hope this was helpful to anyone considering this treatment.
I hope you are all well or on your way to being pain free!

Bump.... things to consider if you are thinking of having cyberknife done..... Wow...yeoooww

OMG, i have had a spinal tap before ... not for TN ... and yes you need to lie down flat for at least an hour after having it done ... i had horrible headaches soooooo bad for at least a week after mine ... they explained the procedure to me before i had it done ... told me they would be using a long, large pin to insert in my lower back ... i though to myself, who are they kidding, just say needle *smirk* ... i had to sit on the edge of the bed and arch my back ... they tried "poking" me several times with no luck and told me they were going to try it one more time and if it did not work they would take me _______________ (drawing a blank, can not remember ... anyway, it worked ... i felt liquid running down my back and thought it was the spinal fluid ... someone ask me if i was on blood thinners and i told them "no" ... later, while in recovery, i had to use the restroom ... i saw bloody gauze in the trash bin ... that was the liquid i felt running down my back ... sorry, i know i am off topic ... this just reminded me of the spinal tap i had ... i completely forgot about it until i read your post ... i can sympathize with you ... makes me NOT want to go this route ... but then, never say never, right ???