Pain pump, I have one, how about one for you?

Thank you so much for your reply.
I sleep mainly on left side, but due to cancer treatments with multiple surgeries I was curious if pump placement has caused any weakness abdominally?
I unfortunately had a very large skin graft from my abdomen related to severe burns from radiation.

I had an intrathecal spinal infusion pump for close to 15 years. I don't believe the pump is the be-all and end-all for pain control. I had a "cocktail" of very strong narcotics, along with a spinal muscle relaxer and a lidocaine type drug in the pump. I also had the option to give myself a "bolus" of extra medication if the pain increased for any reason.
There is an individual trial and error period of finding the correct drug mixture. If a drug is injected into the pump and a bad reaction occurs, it can't be taken out altogether. The doctor can remove the drugs from the port, but there is still drug in the tubing that needs to run through, and this requires constant supervision by your doctor.
Although the pump did significantly reduce my pain, it didn't come without some consequences.
I went on a cruise to South America. While in Cartagena, Columbia, after a long day of sight-seeing, I gave myself a bolus due to increased pain. I then took a one-hour nap. When I awoke, I tried to get out of bed, and couldn't move my left arm or leg. By the time I got to the ship's ER, I was incoherent and my blood pressure was through the roof. This occurred due to the Marcaine in my pump. The extra bolus I took was enough to cause the blood flow to my brain to slow down enough during my nap that I experienced a small stroke.
I ended up in a Columbian hospital for several days. I never complain about US healthcare after that experience. I was fortunate to have an English-speaking neurologist who trained in the states.
My point is that the pump can be a great tool for pain relief, but it doesn't always come without a physical price.
I did recover from this experience intact, but strong drugs can have strong consequences.

My son is considering having a pain pump inserted in his spine using fentanyl as the pain reliever. Looking for someone using this pump with this drug. Your opinion and the good and bad points. He has been in pain for 46 years with 4 major surgeries and tried a number of things to help the pain. Thank you for your responses.

Welcome @jcd, there are many members here talking about pain pumps. I moved your post to this existing discussion that Stephen @wsh66 started a while back and continues to be active today. See
- Pain pump, I have one, how about one for you? https://connect.mayoclinic.org/discussion/pain-pump-i-have-one-how-about-one-for-you/
I did this so you can read some of the previous posts (there's a lot) and connect easily with other members like @carlossierra1287 @ezofcin @gcranor @ga29 @wsh66 @pcjarvis @bob57 @kenyalama @ronstaug @ess77, who can share their experiences.

That is a long time for your son to be in pain and for you to see him suffer. I hope that a pain pump using fentanyl may be the solution for both of you.

@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

Thank you for these recent comments! I was at Mayo Jacksonville yesterday, re: my continuing problems with pain in my back and neck. My issue now after a fusion at L4-5 in January 2021, (successful) is strong pain in my lower back. Although it spreads across my hips, the main pain is the lowest area, more left side. My neck is a problem but the most painful area remains my back. The written report from the MRI’s & CT scans say severe arthrosis I think, in the facet joints. So my NS can’t help, really. He is talking about my seeing an orthopedic doctor who can order an MRI of my left hip, see if that’s referred pain?
I am leaning towards asking for a pain pump. I don’t want a spinal cord stimulator or more injections, or ablations, they didn’t help much at all before I had my fusion. And steroids are not good for our bones either.
I think, when all you think about is how to stop your pain, you spend a great deal of time reclining, not working or enjoying life as you used to, something has to be done.

@ga29, and others...Absolutely true. That's the major life change my son gets with the pain pump. He now can go outside, walk the dog, drive his sports car to the grocery store and even prepare fruits and veggies. He does more than for the first 1 5 years he spent sitting in a lazy-boy reclining, with a small pillow under the side of his head to ease the pain. He watched reruns of Maddox, Hawaii 50, and other re-runs for hours. He got the pump and then he was able to use an X-Box, type a tiny bit on his computer, watch U-Tube, and such. Believe it or not, this is an improvement. He can read again, and also uses voice reading. He began reading when he was 4 years old. This man was very bright, a very good percussionist with a law degree he couldn't even type for his client's information. He can't see the screen well as he can't lift his head.

And, as he ages, all these issues worsen. So, yea for the pain pump for whatever relief of whatever he gets for whatever time. I'm thankful for that small progress if even for a short time.elizabeth

@ga29, and all...If your lumbar fusion was successful, why are you now having more pain in the lower lumbar? All 5 of my lumbar are herniated and all that stuff. I also have increased osteoporosis in the left hip, and worsening osteopenia in the right hip and throughout my spine, I'm getting much more pain in my cervical area and referred pain to the back and side of my head from the neck/shoulder nerves. I'm basically ignoring, and postponing addressing any of these changes until we stabilize my son's situation. I can't be out at all, so just had 2 iron infusions that were desperately needed but will kick in soon and I'll be able to be more active.

I find limited exercise...slowly walking with my walker!!! And, a couple of hours weekly prescribed by my neurologist for the rest of my life, in the 95-degree temp therapy pool. This is heaven for much of my pain. As is medical marijuana. I use a 1x1 CBD/THC tincture nightly for anxiety and pain relief. It is a wonderful help. Highly recommend...I'm a 75-year-old woman who never had any experience with illegal drugs. Not a bit of weed growing up in the 70s. began at age 72 and think it's saving many from pain, anxiety,
It's a wonderful drug when used properly and wisely. I also as does my son use the 1X1 pain relief lotion when the pain spikes and is out of control. It's a great help.

Be well. Be accepting of your body, and where you are with your health issues, and then modify your life to adjust and make life better for you as you are now. Since accomplishing that tough job, I found a bit of peace with myself and my life. Now, I'm making modifications to my life, my closets, my make-up, my hairstyle, and my old clothes are gone, and got new everything, from inside out. I haven't done that for myself in many years. I new nightwear, tops, etc, and tossed all the clothes I no longer can or will wear, old or new if it doesn't look good, I don't wear that look anymore since I rarely go out, never at night...I dealt with and am dealing with the sadness of moving into this part of life. Yet, it's making me happy. Lightening my load. Try it. and I pray your pain is addressed and controlled. Elizabeth

Thc/cbd has made me more mobile than I have been in ten years. Helps so much it doesn’t take pain away but being more mellow help lessen pain. And I’m a 62 who also now grows my own

Good advice, Elizabeth. My fusion was only for L4-5. The L5-S1 area is continuing to deteriorate and cause pain, as it says in the latest mri report. Perhaps the fusion should have been L4-5-S1. The NS at the time was using his best judgement. I have been diagnosed with osteoporosis this year too, that may have contributed to that decision. Getting older is not for sissies they say! I thank you for your thoughts and suggestions. I’ve been thinking about this for the last couple years, as I’ve read all the comments about how much better it works. I am trying all the alternatives first in hopes that can lessen my pain.