I apologize for not posting on this blog much anymore. I have been spending most of my time on the Occipital and Peripheral Nerve Stimulation group on Facebook. We now have almost 250 members, most of them very active and willing to help others. To me that is a more valuable resource since there are multiple opinions and experiences provided instead of my one-sided story. It is a closed group so any Facebook friends outside the group cannot see what you post (your medical issues are kept private) and the group itself has been amazingly helpful and supportive.
However, I think what I have learned in the past year or so is important to post here for those who stumble across this blog looking for information. I have always called my stimulator an occipital nerve stimulator. Turns out, it is really a peripheral nerve stimulator. Although the terms are often used interchangeably, when it comes to surgery, there is a difference. The difference is in which nerves the leads of the stimulator are placed on. Everything else is basically the same...the device, choice of battery placement, how the leads are put in etc.
Occipital Nerve Stimulation (ONS):
This is more common. The surgeon places the leads on the main branch of the occipital nerve, which is located in your neck, around your C1-C2. This is where the incision will be made. Also, if necessary, many doctors are finding it more effective to put wires in the front of a patient's head as well, usually on the supraorbital nerve. This, however, means they often make an incision on your face, usually by the temple. The idea is that with leads in both the front and back, the whole head will be covered. For some people this is the case and is great. For others (like myself), peripheral nerve stimulation is a better option.
Peripheral Nerve Stimulation (PNS):
This is a less common option. There are fewer surgeons who do this type of surgery because it's tougher. PNS involves placing the leads on any peripheral nerve...generally any nerve at all that is giving you pain. This could include the trigeminal, auriculotemporal, or any branch of the occipital nerve, for example. Incisions are made close to the nerve being stimulated, wherever that may be. Surgeries like this are harder because there are many blood vessels in the head and not a lot of room to work. So just because a surgeon says he does occipital nerve stimulation does not mean he does peripheral nerve stimulation. I just want to be clear about that.
|Image from RahulGladwin.com|
This is by no means proved by any research and is nothing other than my opinion, but from talking to people that have many kinds of pain and have had many different surgeries in many different states and countries, I'm comfortable saying that peripheral nerve stimulation seems to be more successful in managing pain than occipital nerve stimulation...if, of course, your pain is not on your occipital nerve. It really only makes sense. If you have pain from your trigeminal nerve, put the lead on the trigeminal nerve.
I thought this was a topic worth clarifying for anyone researching surgeons for one of these stimulators. That was you can use the proper terminology to make sure you and your doctor are on the same page. If your surgeon only does ONS but you think you'd be better off with PNS, find another surgeon. People seem to have a loyalty to their doctor(s), often based on nothing substantial, and you have to give that up to do what is best for yourself. If you're going to get something implanted in your body, you might as well get one that does you the most good.