Advanced Neuromodulation System-For Head Pain Relief?

[dally1932]

I have had head pain post AN surgery for 7 years. I also have pain on the left side, including lower back, arm, leg and the left side of my head. It has been diagnosed by several Pain Clinics and Neurosurgeons as Occipical Neuralgia in regards to the head pain. The Pain doctor wants me to try the ANS for pain relief. It is an invasive procedure that involves a lumbar pucture and running wires with electrodes from my low back up to my neck with the leads being inserted between various vertabrae.  These wires will be in my spinal canal. Possible side effects are infection, bleeding, spinal fluid leak and paralysis. The propaganda CD indicates it works 50% of the time at a pain reduction rate of 50%. Upon insertion of the wires and leeds, I would wear an electrical controller for a week on my belt. If this was sucessful in reducing the pain, the unit would be implanted such as a pacemaker under the collar bone or in the left side. Nothing in the information indicates it is used for head pain. Has anyone tried this for post AN head pain? I have tried nerve blocks (9 just this spring), TENS unit, Accupucture, and a multitude of medications. If you have tried this method for pain, please let me know your personal results. I realize it may help the left arm & leg pain, however the head pain is my first priority.

Thanks,
Chuck

[Janet]

Hi Chuck,

My pain doctor offered me this procedure. They were enrolling patients in a study. I declined, as I had already decided on surgery to fix the occipital nerve. I did try to find info on the web. I wanted to find patient feedback. I couldn't find much. I think there is a Youtube video, if you search "Occiptal Nerve". I thought if my surgery didn't work, I still had an option to explore.

I can tell by all the things you have tried ,that you are talking serious pain. I had horrible occipital nerve pain and I know what you are going through.  Best wishes.

Janet

[dally1932]

Thanks Janet, I have been following your progress after your surgery a year or so ago. I am glad your initial surgery and follow-up surgery helped with your pain. I was referred to Dr. Raj Murali, who is head of neuro surgery at NY Medical college last April (year ago). In several phone consultations with my primary doctor and with myself he was very optimistic for surgery such as you had done. However, after spending approximately $1500 for airfare, lodging and rental car, he told me that I was not a good canidate for surgery. My "new" pain doctor suggested the Neuromodulation system. In talking with a RN/patient advocate yesterday, after my post, she indicated the procedure was FDA approved for chronic trunk and limb pain but not FDA approved for head/neck pain. She went on to say that doctors are using it for migrains/headaches with sucess regardless of it not being FDA approved.

Thanks for your post/response!
Chuck