Ok, well the procedure itself went great - I went in to have the PRF (pulsed radiofrequency lesioning) a week ago today. It was great - I entered the theatre in full on attack mode - and left it about an hour later in 'no' pain at all :-) some post op pain is normal - they did just have live electrodes inside my skull doing minor burn damage to the gasserion ganglion on my right side of my face. Doc says all going well his admin guy would phone me to book me in to have the left side down in a few weeks time - depending on how the right side has healed up.
If the right side doesn't turn out as expected i may need to repeat the procedure for the right side again before they'll do the left..
Wow, so this week's been so topsy turvy. The first coupla days were totally fine, I felt so blessed to be having 2 pain free days in itself. Then things started to change...
I would get the post op pain sensations in a TN style attack, and bilaterally. So even the pain on my left side, the sensation was the same as the treated right side.. Confused me a lot, still does..
Basically to cut the story shorter - where I am now.
As of the past 36 hours I'm having TN pains again. They began in my right temple, ear and lower jaw. I always had referred pain through the salivary glands in my neck when the pain got bad - now they act up on their own as if just another extension of the T nerve themselves.
Before, the attacks would begin moderately before becoming severe - but now they hit with me at a 10/10 grade in less time than it takes to blink my eye. You know the ones, they literally knock you to the floor as you gasp in shock and my new horror that the treatment may not have worked..
But also before, the attacks would last for days each one. Now, they're reduced to between 5 minutes and 1 hour. So far at least. Deep breathing Kerry! It's just been a week and this does not yet mean anything. Doc said that if this did not work, then a full ablation of the gasserion ganglion would be his next best option.
I don't know what to do. The more damage I get caused to the ganglion from these PRF procedures reduces any chance of success that an MVD may have down the track..
For now, I'm trying to switch between positive mode that this HAS worked and this is just the nerve "settling" in to it's new & hopefully "reset" mode for a bit longer at least.
My touch triggers have reduced, but once i'm in attacked mode and in pain already, i cannot again touch my face or head.
I'm a little frightened at what's gonna happen now and what my options will be available if any at this juncture. I do NOT want to go back to the intensity and frequency of attacks I had been having - but I do not know for sure as yet what's gonna happen. I just know that these last 36 hours the pain is scary bad.
My memory is - well disappearing on me now quicker than before also. It is deteriorating so pls forgive me when I am not online for some time. I am having fade outs during the day - doh! And my recall for events and people is being affected.
I need a good neuro who'll care for me and that has been a hard one to find so far. I've been to four neurologists in seven + years. Had three GP's, two Neurosurgeon consults, an ENT and now this wonderful Dr Espinet who means the world to me - as he's the only caring doctor i've met who shows concern and a desire to help us his patients! A wonderful man! But he is not a Neuro, and I need to find a new one of those to help me and maintain my care.
Thanks for listening, I'm sure i've left out a lot of stuff here - it's almost 5 am, i've had a bad night from "it" and a lack of sleep doesn't help my memory much at all. So cheers to everyone here and I hope you're all doing better since I spoke with many of you before.
Best wishes to all for a pain free day / week / month!!
Kerry X x
aka Ko, Koala.