Three weeks ago I underwent cranial Cyberknife for trigeminal neuralgia. Those of you who know me, know that I battled and cursed at this wicked ailment for eight long years. The decades old options for treatment of this vicious nerve pain are practically medieval in this day and age and so I waited for modern technology to catch up and lived with lidoderm patches on my face and excruciating pain in my face that no medication could take away. Not any that I was willing to go down the slippery slope for anyway.
I had atypical trigeminal neuralgia meaning that most sufferers of this dreaded "suicide disease" have lightning like stabs of pain which last for a few seconds to a few minutes on one side of their face. My TN (trigeminal neuralgia) started out as intractable pain that would last for days and sometimes even weeks in the right side of my face. There were many trips to the emergency room and to the neurologist and because my pain was "different" than typical TN it was harder to get a diagnosis.
Knowing what I had didn't make this nerve pain any easier to deal with and my course of treatment included Topomax to a degree of tolerance for me and using the patches. I also took Tramadol for pain and this was not very useful for nerve pain but does help my other arthritis pain and fibromyalgia and I take a very small amount a day.
October of 2011 brought a new set of symptoms along with the pain. My scalp and face began to itch and while my scalp has always been tender since my TN began, at this point, I could hardly lay my head down on a pillow. I saw my neurologist and these new symptoms told him that things were changing for me. I was miserable with my pain. My depression was mounting and I had ask my husband to assist me in committing suicide. These were very dark days for me. Eight years of blinding pain and now new symptoms have emerged.
My neurologist send me to see a radiology oncologist who is specialized in Cyberknife. Cyberknife allows pinpoint radiation to irradiate tumors, cancer cells, and yes, the trigeminal nerve in my brain that has taken away my life. At last...new technology. There was a fitting for a mask, a CT Scan and an MRI and a waiting period while the smart physics doctors and computers found the best way to maximise radiation to that nerve and minimize radiation to everything else.
The call came and I went in the next day. I simply slipped on my pre-made mask and laid on the table. I had ripped a CD of all of my personal favorite songs and they played it for me while the Cyberknife moved all around me. The procedure took about 80 minutes.
I came home and slept for 3 days. When I returned to the details of my life I was still tired and I was told to expect that. But most importantly, everyone handles radiation differently...
About a week after my Cyberknife treatment I started feeling a little foggy and got a dull headache. I called my doctor and he said that my brain was swelling from the radiation and put me on some steroids and I felt better within just a couple days. After finishing the steroids and being off of them for 7 days another dull headache occurred which got steadily worse with a sense of pressure and again I felt very weak and miserable. Another round of steroids for brain swelling.
Right now I have 1 more day of steroids to take and we will see what happens.This journey through TN has been one of patience. First, living day to day with this horrible pain, then being patient while we waited for new technology to appear on the horizon. And now I wait for the side effects of the radiation to quiet. My Cyberknife treatment for TN has been one of hope, courage and patience...I have to believe the end result will be worth it. I am very fortunate to live in a country where technology advances daily. My blessings are many...
If you have TN or have had cranial cyberknife for TN I would like to hear your story. There is healing is sharing.
No comments:
Post a Comment