Had pain pump implanted. No relief. Anyone have similar experience?

@heisenberg34 I am on my third pump, initial implant in 2008. I too had the same issues, little pain relief, was pushed to ablation (worked great until nerve regrowth), countless steroid injections, and was told that my dose was high. I started out on hydromorphone, which made me swell up like a balloon, to Fentanyl, that I am currently on. I didnt receive much pain relief. I tried to live with it thinking a little relief was better than nothing. In 2022 went for my third pump (baterry was dying) with a new doctor because PM practice didn't have a surgeon to place new pump. It was the best thing that could have happened!! I went for a surgical follow up with the practice that placed the pump and the NP asked about pain level, I gave her a look and she said be honest. I told her that it runs between a 5-6 most days and other times it's higher. She asked if I wanted an increase because the doseage was very low. Of course I said yes! I felt a lot of relief all most immediately. It was a 20% increase. I couldn't believe how much better I felt. I never went back to the other PM practice. They tell patients their dose is high when it's almost at nothing. Whole other story. I have had a few more increases since then.
Do you have a PTM? I am allowed 3 bolus a day and that was another game changer for me. I use a bolus when pain gets worse. The pump can also be programmed to increase doseage at specific times of day when pain is usually at its worst if you dont have a PTM. I am not 100% pain free, maybe closer to 60-70%, and I just deal with the rest.
So what I am trying to say is please consult another physician. I think you said you were going to a neurosurgeon, I would try a pain management clinic or other neurosurgeon that takes your pain seriously and will help you find relief.
Best of luck to you!

@jade2020 That is so terrible. No one should have to undergo that kind of treatment! I hope you have everything documented. I am not one to jump to a lawsuit, but your experience seems to warrant one... and fast. So sorry for your daughter! I hope and pray that she will come out of all this okay. In my prayers.

My specialist (new one) has been increasing my dosage over the past few months. The dosages were being increased every few weeks when it was first implanted. Yhis new guy said he was going to add some kind of anesthetic to the hydromorphone in the pump. If it helps any, I will repost to let you know.
I think docs are limited as to how much the meds can be increased as a safety issue. I could be wrong.

@heisenberg34 Here it is March and my sister is still alive. I don’t know how considering what she is going through. Last time I posted she had her pump removed and a new one put in. During that surgery her lung was nicked then from that point they did another surgery to stabilize her vertebrae. Since then she has lost all use of her left leg and foot now the same is happening to her right leg. She is living in a wheelchair almost 24 hours a day. Can’t sleep has bed sore and now has yeast infections where her body overlaps. She lives alone in an elderly housing. She gets help most days but on some no one shows up. Her pain is unbearable and I have reached out to different groups to get her help. We tried to get her hospice but they rejected her. Palliative care wouldn’t see her. She feels due to having a pain pump and so many complications no one wants to help her. She is in Massachusetts. Her new pain pump is dropping due to no muscle or fat to hold it in place. Any suggestions.

@heisenberg34 Hey- I don’t know for certain about drugs other than morphine, which doc can raise 15% max. Frequency of additional increases (as told by current doc) is every three months.

@bilt4pain I have my pump since April 2023 and it has never worked. Sorry to be the bearer of bad news. I’m on my 4th different meds. I also had a spinal cord stimulator for 2 years that never worked. I have severe neuropthy in my lower legs for approx 12 years