Quote:
Originally Posted by Burntmarshmallow
Hi Terri.
I did notice you said you had radio frequency ablation that is like Gamma knife .
but it probably wasnt done on your Trig nerve ??????
and too the leads do not seem to be to any of the 3 branches trig nerves and more to the base of brain/ upper spine area.
It is great the doc got them up far enough.
If you go back a few pages on page 2 ?? here Kim also had SCS but later had a PNS implanted to the Trig nerve and the SCS removed. she also has 2 stims one for each side of face for BI-Lat.
I am enjoying the way everyone is sharing and giving such important info for others to find hope in... and power ..knowledge is power when researching the options one has available to them.
I would like ANYONE who has had stim for face pain to share ... The fact is there are times when this dose not work and the ending isnt happy . that is true in life and with this option. what works for one may not work for the next.
My friend Calewark is having hers done in Colorado too as did Mark. thats pretty awesome if ya ask me 
make sure you follow doc instructions on lifting and bending !!1 dont over due it and know we have you in our positive thoughts and prayers for the stim to be ever lasting way to manage your pain.
Many many thanks for sharing and posting here. Terri you ROCK!!!!!
PEACE
Tina & T-Rex
p.s. I wonder.. ask if having a stim was a first option for you? I ask because for most others this is a last option . but for me since MVD,gamma were not an option my last resort was having the Stim. being the first to try PNS. in the USA . I do want to say again that SCS and PNS are the same thing the only difference is the placement of the leads It is referred to a PNS because the leads are placed in the facial area not to the spinal area. they are both simulators that mix the pain signal . |
Tina,
My official diagnosis is atypical face pain. This is defined as pain that does not have a physical reason -- ie., trig nerve damage, but instead is a nerve to the brain miscommunication. The pain is in the same area as pain for the trig. nerve, but my MRI's do not show any damage, and I have constant pain, instead of pain that is common with TN or ATN. Most of my pain is in my lower face and so my doctor was very hopeful that we could get coverage from placing the leads in my spine. Surgery is not a recommended option for atypical face pain since there is not a physical reason for the pain. I was given various blocks and injections before the stim. was considered. I think this is the protocol that was required for us to get insurance approval.
I am thankful that I had a doctor that was willing to take a chance on this treatment. He appears to be in the minority!! An implant of a PNS is still a possibility if we find out that my pain relief is not enough when I try to reduce my medications. I am hopeful that the SCS will give adequate relief. Once my incision sights are healed, I doubt that I will even know that I have an implant except for the tingling in my face and the occasional need to charge the battery.
Take care and have a great day!!
Emelie