Phantom Pain / Spinal Chord Stimulator

[Murphy's Law]

This following is an excerpt from a website stop pain . org

"Phantom Pain
The patient's arms or legs are usually involved, but CRPS may affect any part of the body, such as the face or trunk. In some patients, many different areas of the body are affected. CRPS can be progressive (meaning that it gets worse at one site or spreads to other sites), or it can stay the same for a long time or even improve on its own...
The actual cause of phantom pain is not known. Most authorities currently believe that both phantom pain and other phantom sensations are generated from the spinal cord and brain. It is believed that when a body part is amputated, the brain region responsible for perceiving sensation from that area begins to function abnormally, leading to the perception that the body part still exists.
Treatment of Phantom Pain
The treatment of phantom pain is difficult. No one treatment has shown to be effective in a majority of sufferers. Fortunately, there are treatment approaches that may be helpful in some patients.
Drug Therapy
Drugs used for phantom pain are:
-Antiseizure drugs (such as gabapentin, carbamazepine)-Antidepressants (such as amitriptyline, nortriptyline)-Antiseizure drugs (such as gabapentin, carbamazepine)-ocal anesthetics (such as mexiletine) -Alpha-2 adrenergic agonists (such as clonidine or tizanidine)-Others, including calcitonin, baclofen, dextromethorphan Opioids (such as morphine, oxycodone, methadone)
Other Therapies
Other approaches include:
Nerve blocks-Spinal cord stimulation-hypnosis, biofeedback, and other cognitive techniques (such as relaxation training and distraction)"

In my search for relief, I have tried most of these things. And More. One I havent, that has recently been discussed among my docs and myself is implanting a spinal cord stimulator. It is a device they implant along your spinal cord with a battery under the skin of your belly. You have a remote control so when you have pain you can send a kind of pulse to it. Stops the pain.
I have done a lot of research on it, and you need to be a certain candidate, and on top of that there are substantial risks with low percentages of success.:eek:
My question is, has anyone out there heard of these? Maybe have one? It would be nice to have some actual feedback from someone who knows.
Thanks!

[upstream]

No I haven't heard of it, but I'm concerned that they are messing with your spinal cord. In high school one of my classmate's father had spinal cord surgery, and wound up paralyzed because of an infection or something like that. You might want to look into the risks of such an operation.

[Murphy's Law]

they are very big risks. only 50% chance of anything happening at all. very big risk of paralysis. Might even give more pain. I am just left with not much option. The pain is at times unbearable, and nothing else has worked. Meds forever? I don't know, just hoping something might give.

[Oakcrest12]

I also suffer from extreme phantom pain in what was my left leg. And like yourself have tried everything including the spinal cord stimulator. I personally hated it. They put temporary leads into the spine that came out your back and connected to a unit that you needed to carry around with you for a couple of days to try it out and see if it worked. After they put the leads in they try different settings so that it gets the signal to affect the correct area and after they did all the settings none were perfect, but some at least hit the area. The problem was that now not only did I feel the phantom pain, but also these big shocks in the "phantom" area. So just thought I'd let you know, but that's not to say you won't find it helpful. The only thing that I have found to help are my pain meds and taking temazapam at night to let me sleep at least a few hours.

[moog]

Any time you choose a surgical option around the spinal cord, the best they can offer you as a success rate is 50%. Trust me, I've had 2 major surgeries to reduce the pain and get off the meds. Nothing will ever "fix" or "cure" it and there will always be pain, in fact it causes all new pains from the trauma of the surgery itself. If you can't handle the pain and meds any more, I'd suggest asking to be referred to a highly reputable Neurosurgeon and have them make the assessment. They will then give you what options are available and the risks involved.

One medication that is often overlooked and has had great success recently in this area is Topamax (Topiramate), used as a nerve blocker. It worked for me for a while.

If you have any questions, or want some specifics; send me a pm.