Hi. I'm Julie. New here. Was doing research on a new procedure which is how I found this site.
My neurologist told me about this last year. He said it's experimental and I'm scheduled to have this surgery soon at USC. He said that they've done it to 2 women with symptoms similar to mine and it has been successful in lessening their pain.
It's not the radio frequency, but a TENS unit. The wires will run through my cheek and attach to the nerve and a small electrical stimulator is supposed to lessen the pain. If it works I'll have a second surgery to have the stimulator permanently installed.
I have atypical neuralgia. Thought I would pass this on for those of you looking for something different and new.
Would also like to hear from those of you who might know more about it.
I'll keep you updated on how it works, as well.
I have had the Gamma Knife. It helped but appears to be wearing off. Of course my job has been stressful these past couple months, so it might be that.
Thank you for reading.
God bless you all.
Can you describe why you were diagnosed with atypical TN? I wish you the very best.
The Doctors diagnosed me with ATN because my pain is constant. 24/7. I live on Oxycontin and Tegretol. This barely keeps it managable and there are the flare-ups, like those I just got this weekend where the medication isn’t enough.
I’ve had this pain for 4 years now and was misdiagnosed for over a year.
I had a nerve block, which made it worse, the Gamma Knife, which helped a lot, and now the facial nerve stimulator is due hopefully this month.
Do you have an appointment for this procedure?
Hopefully in the next 3-4 weeks. I had to go through a psych eval because they are installing electrodes in my face. And if it works, they will install the actual stimulator (about the size of a pacemaker) in my hip. (If it works there’s a second surgery to intall it permanently).
I talked to my doctor today and if the insurance approves, we are good to go.
I also asked him if there have been any other patients who have had this done and he said there have been only two and it has helped them – and both were much worse off than me before the procedure.
Here’s more information: http://facial-neuralgia.org/treatments/surgical/neurostimulation.html
I will keep everyone updated and I will pass along whatever information anyone wants.
Sorry, here is the link to the facial nerve stimulator.