@colleenyoung, @jcd, and all...Yes, my 54-year-old son has a pain pump delivering Dilaudid from the puck-sized disc implanted in his back, kidney area/waist. This seems to be the drug of choice for his pain from dystonia, and back/cervical nerve pain 24/7 for the last 20 years.

He's lost his entire life, and lives a difficult life with constant pain, spiking at times when he uses his left arm, or hand or raises his head to look straight or upward. Those times the pain causes an electric current to run through his body. It's horrible but the pump has made an enormous difference. An enormous improvement.

The catheter runs from the disc at his waist along his spinal cord to his cervical neck area, helping his entire body re pain. Nothing is controlled. The normal pain from the Dystonia causes all his body muscles to contract constantly, putting his body in a fight/flight state all the time, but it helped, creating full body pain/discomfort. He takes additional meds orally -Tinzanidine for muscle relaxant that helps take the edge off. This doc doesn't want to add to the Dilaudid. It's so strong, any add-ons are oral. He also takes drugs for anxiety, BP, etc.

He's had several nerve ablations that did not do much. He had one several months ago that did, however, relieve some of the neck/shoulder/arm pain that's only slightly helped with the pump. They are supposed to be given every 6 months if needed. His last only a couple of months, then the electric pain returns as before. Botox injections by a doctor who really understands the particular needs of your son may be helpful, depending on the causes of his pain.

My son was considered at Mayo for Deep Brain Stimulation Surgery but denied as they didn't think it would address the pain issues that are his main struggle. He has tremors, and jerks at times, which the surgery might address, but the pain is his life killer and can't be helped with this surgery.

So, all to say if you have severe pain that can't be controlled normally and you have a reputable pain doctor overseeing your health, the pain pump can be very helpful. It has given my son the chance to at least go out of the house, drive and get his own groceries, and be slightly active. Before the pump, he could do none of these things. I helped with it all, but now he has more freedom and mobility thanks to the pump.

He also had side effects from Dilaudid. It's such a strong medication his intestines are a challenge, it affects the positioning in a chair or bed. Having it in the back is great as it's out of his way for most movements and if he has a belly or whatever it is better positioned. He has the 'bumper' thingy he can use to give an extra dose of the med, but it is limited and controlled so he won't have the kind of extreme constant body pain as before. For many years prior to the correct diagnosis here at Mayo, he used Fentalyn patches daily, up to 75-100, and took the normal strong pain meds for many years. Now, only the pump for the pain, Tinzanidine for muscle relaxation-at highest allowed dosage, and other meds to help whatever.

So, be sure you have the best available doctors, ask bunches of questions, and learn everything you can about your issues and your body. You as a patient much have control over your health, and your care, your decisions are yours. The pump decision was a keeper for my son. It doesn't solve your problems. It may create different issues. But, it can certainly be an important answer for helping improve your life.

May you and your son walk this journey together in peace, with the best care available.
Be blessed. Elizabeth