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PHN Survival Skills-Looking for Kimberly-Peripheral Nerve Stimulator surgery?

The old discussion was locked so I'm looking for the member named Kimberly who was getting the Peripherial Nerve Stimulator therapy and how it worked for her. i am currently fighting with my insurance co to get ot for PHN/TN on my left scalp and face. they say it's not approved for the head and face only for the spine. but my surgeon is world class and has done over 400 successful surgeries for it there and we;re doing it at OSU's Wexner Neuromodulation Center. So if they have an entire Center for it i'd think they'd eventually approve it!

anyways i'm looking for anyone who has had this surgery and how it worked out for them.

5 Replies

  • frankjs barclay430

    Interesting that you mention this PNS therapy. I have just been reading and trying to find something about Peripheral Nerve Field stimulation. From what I have found it is the next generation and is much less invasive. If my memory serves there is a clinic in Colorado doing this new form of stimulation with good results. In regard to insurance I did find that hard to determine whether insurance did cover, most of what I saw said no coverage. Try this

    • barclay430 frankjs

      thank you frankjs. i still haven't had the surgery and i'm going to ask the surgeon that perhaps this is what you've mentioned as he spoke to the procedure as being very un-invasive and needing to just follow the Trigeminal Nerve to the supraorbital and infraorbital areas. and that the device-if this works for me-would be implanted but the control would be wireless and external. thank you for bringing this to my attention!

  • frankjs barclay430

    Lets hope for the best, I have read it has resulted in a 90% reduction in pain. I have been trying to find some place in the Carolinas that offer the procedure but have had no luck. Keep me posted on your experience.

    • kimberly36176 frankjs

      I live in Charlotte, NC and Dr. Thomas Heil did my procedure. He is one of the top doctors of the procedure in the country. I would say 90% is quite high. They will say about 50% for this type of pain. This type of pain is a 50/50 shot of it working for it or not is what they will tell you.

  • kimberly36176 barclay430

    Ahhhh glad I got on this evening.  I will tell you it is not the end all to be all. It has now been almost 2 years since I have had the surgery and I have still had to have nerve ablation and some nerve blocks. The nerve ablation did actually seem to give quite a relief but the process was more than excrutiatingly painful. They say that my pain would be worse without it but I don't know anymore. I really do feel hopeless. The one big issue that i have had with mine is that they had to put 3 not 2 electrodes in my spine. Most people have 2. They also have the one so far over in the cord (they call it the gutter) so I didn't feel it all down my leg, makes it feel like there is something painful under my shoulder blade. It can cause quite a bit of tension in my neck when I have it too high. I do not know how it will effect you, since you are dealing with a completely different area of the body. Mine was on my left thoracic side right along my bra line. The surgery is not bad. They should at least try and let you do the temporary implant for 3-5 days to see what kind of relief you get. That is what they did with me. The battery is just external and a third of the cost than the permanent. I am following this conversation, so if you reply, hopefully I will receive it. If you have any other options people have tried, please let me know. I literally have tried everything humanly possible (gabapentin, low dose anti-depressant, acupuncture, lidocaine patch, capsacin patch, thoracic nerve block, spinal nerve block, spinal cord stim implant, thoracic nerve block again after implant, nerve ablation, Cymbalta - and sadly nothing. I do have an Rx for Hydrocodone and will NOT take during day and will just suffer, I do take at night more nights than none, just to give me a hour or two of some relief) GOOD LUCK

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