Good evening, all.
I have posted this information before, but am reaching-out again, as I want to know if what I am experiencing is happening with other TN patients and those who have received GK and/or CyberKnife.
I would so appreciate your feedback, suggestions, and/or help regarding my current situation.
I had Gamma Knife in October of 2011, Cyberknife in April 2012, and most recently an SPG Block.
After the Gamma Knife, there was no relief initially. Then I had approximately 4-6 weeks of no pain. Then my pain returned with a fury. I opted for Cyberknife the second time, as the holes in my head from the halo took a long time to heal.
I had a host of symptoms that were very unpleasant; burning in my mouth/face, sores that appeared in and around my mouth, thrush, etc. My neurologist suggested that an SPG block would be helpful with the neuropathic pain (non-electrical shock type), which I elected, as my shocking pain was virtually gone.
While I had numbness and burning before the SPG, it was limited to my mouth. Now my eye has felt weird ever since the Cyberknife procedure, though it is not dry; just feels like someone's finger is in there or cotton is stuffed in it somehow. Now, my numbness consumes the entire left side of my face and head; including my jaw, throat, tongue, lips, nose, eye, cheek, eyebrow, and forehead - even continuing up into my scalp.
While this is better than the pain (I suppose), it presents a host of problems; including food and beverages falling out of my face, which is very uncomfortable emotionally. If my husband is not around, I have to rely on others to tell me things are stuck to my chin :-( It is affecting my speech, I can not feel my mouth, and things are often in my eye, as there is no feeling there, either.
Has anyone had these symptoms post-Cyberknife/SPG? Can I expect the numbness to dissipate and eventually go away? I have heard that nerve damage in your brain is very different than nerve damage elsewhere in the body. Can I do anything to improve the chances of the healing of the nerve bundle in my brain/brain stem?
I can not imagine having the symptoms I have now for the rest of my days :-/ Obviously, my relationships are affected and my mood is quite erratic.
Thank you for reading and for any help you can offer.