Pain pump failure

I had An SCS implanted two years ago for my CRPS and it has done nothing but caused more pain. I now have chronic lower back pain due to having to arch my back to get the simulator to work constantly. The simulator doesn’t work if I lay on my sides actually lay directly on my back or arch my back constantly did you get yours taken out? I’m curious do they have to leave the leads in or do they take the whole thing out battery and leads? My doctor said that scar tissue holds the leads in place. I want to get it removed but I’m scared of how the surgery will work if scar tissue is holding these leads in place. Just a thought of somebody cutting through scar tissue in my spinal cord scares me.

@daxel79 Sorry that you didn’t get any relief. I’m seeing more and more people say that they did not get any positive results. Mine did help originally but stopped after a little more than two years. I did have mine removed. The neurosurgeon did a great job of removing mine including the paddle lead that was sutured in. I spent a while speaking with him and was impressed by his confidence. That’s the important thing. I wish you well.

Here we are again, my sister is in the process of shutting off the pump. We are in Massachusetts. The doctor shut the pump down 20percent. They started her on morphine. The next appointment was 2 weeks later and it was turned down 30 percent more. Now the up her morphine to 30 which is no help. They upped to 60 mg 30 in the morning 30 mg at night. She is suffering and now the doctor wants to put her on methadone. She is very sick. She has many issues with her heart and lungs. The doctor wants her to get an EKG before starting the methadone. We are at a loss. Have no clue if this is going to kill her. Please help. I called Brigham and women’s and Beth Israel with no help. They tell us to go back to the doctor she had. It seems like no one wants to get involved.

@jade2020 I am truly sorry to hear of these horrible circumstances. I had a pump trial with morphine… no help. Then they used hydromorphone( Dilaudid). That dropped my pain from an 8 to about a 2. My understanding is that this drug is 5x more powerful than morphine. It seems like that should be a better choice in your case. Whatever the case keep fighting for your sister. Keep well and be blessed.

My trial was with Fentanyl, it stopped the pain but caused incredible full body itching. They installed the pain pump and put in Morphine, the Morphine caused a 50% hearing loss and did not stop the pain, so they took it out and filled the pump with Hydro-Morfo and that has not stopped the pain either. I would not recommend a pain pump at all. They are expensive and risky at best.

@heisenberg3
Hi she was also on Dillard but the doctor never increased her dosage. Almost 5 years of same doctor no increase and lots of pain. With the catheter blocked and more medical issues now shutting off but the pain is unbearable. I really need a pain doctor to assist her in the process. The morphine is having side effects.

@jade2020 I truly hope and pray you can find a pain doc who is both competent and empathetic. One who will take the time to really look into your sister's case.

@thecoldcfart

I was considering getting a pain pump for my CRPS. Before I read this that is. Does the medication dispensed in these pumps still make you feel so groggy and high? That’s what I’m trying to get away from (I currently take oral pain meds) but I’ve grown tolerant to them, I thought a pain pump would be the answer to my pain?

@daxel79 The medications are dispensed into the spinal fluid and do not enter the general body systems, so you don't get the effects of feeling high or groggy. At least I have not experienced them...so far. And, I have not gotten any pain relief either. The trial should give you a good idea of whether the permanent implant will work. I wish you well.