Severe chronic pain and Intrathecal pain pump

I am truly sorry to learn of your increasing pain. Have you been tested for peripheral neuropathy? I had bad thoracic and lumbar pain from a bad ski fall ten years ago. After many treatments of this, that, and the other, I finally had a pain pump implanted three years ago. The trial went great, but I have not had any relief (except for ONE DAY) so far. Somewhere along the way, I was told that I have developed neuropathy. I know that the pain pump has a high success rate, so it may be a real help for you. I can't help you with any Mayo Clinic docs but wanted to share my experience. Wishing you much success!

I was in a similar situation and had an intrathecal pain/baclofen pump placed. I developed Arachnoiditis, which is scarring of the thin membrane that surrounds the spinal cord. I had the pump removed, but the arachnoiditis persists. The pain is much worse than the pain that led me to the pump. It it a progressive disorder and there is no treatment. Before I had it placed, no one told me about this potential complication

Before having it placed, Please do research on this complication. Many people on this forum have come forward with this outcome of pumps

I had an intrathecal pain pump implanted with hydromorphone. I am severely drug sensitive and can't use opiates. It was believed the tiny drip would be OK. It was an OP procedure, I got home, felt "funny" and collapsed breaking my femur. I found myself in ICU, where I was told I had coded. After surgery I spent 6 heinous weeks in a rehab center. If you have any drug sensitivities beware because you cannot control the drip. The pump is still in place because I don't want more surgery to remove it. Naturally, it is empty but I had to have it deactivated because it continues to generate an electronic pulse of some kind (and it beeps). The "lump" in my hip isn't too evident but sometimes poses a discomfort if I lay on my side but that is the only current downside. I now use low-dose naltrexone for pain relief and lots of PT. Also, try Calmare scrambler therapy, it works for some. Google it to find local providers, it doesn't hurt, isn't invasive and won't "kill" you.

I had an intrathecal pain pump that helped relieve the pain until complications caused a granuloma and partial paralysis. The granuloma was reversed and I removed the pain pump. I do know many people have great success however I would suggest extensive Research before implanting. I would not do it again.

Recently undergoing the same horrible experience from the Flowonix Pain Pump I received two years ago. The first Neurologist that was filling my pump with Morphine, I was having massive side effects and would not listen to me..months of hell until I instructed him to remove the drug completely out and fill me with saline until the actual surgeon located me a new Pain Management Specialist to take over. Within two months was referred and when this specialist realized who the other physician was, he was heated and nothing good one bit.
Remind you I have a severely complicated system and body does not react to many medications like others does. Also live with a few Autoimmune Diseases and some of these doctors needs to enroll back into school.
Moving on with this pump, new doctor began me on little doses of Diludid, in the mean time I kept complaining about my Neuropathy, keep getting told it’s from diabetes.. after a while I wasn’t buying it because my diabetes has been well under control for over five years and never experienced such pain that began increasing after this pain pump was implanted.
My last refill the next day I suffered so badly I could barely walk, my lower back above my tailbone was so bad even to the touch, pain down my legs and left hip same side this pump is on. I couldn’t lay on that side without getting out of bed almost to fall to the floor.
I did inform the NP this pump is the cause of this severe neuropathy and it’s pushing against nerves.
Now I’m getting sent to a MRI which the medication has to be drained out for the test. Guess what? After this test I’m demanding saline until I can get this darn pump removed..had nothing but hell since. No doctors will discuss any faults or failures on what can happen. Only give patients false hopes. Not getting into the urinalysis delay I get after refills, an Ultrasound for that.
Advice anyone who’s considering these pain pumps please do big time research and not just the positive feedback that comes from the makers nor doctors

@laughlin1947 ra1970 I'm in exactly the same position, the pump has turned into a nightmare. I had it removed, and I'm in more pain from the scaring. The pump had me doped up all day long, I didn't notice it until family and friends told me I was a mess. I could go on and on about the negative aspects of a pain pump. Then you have no recourse legally when things go south. I was nothing more than a "cash cow" for the doctor and hospital. I'm living in a nightmare to this day.

@qwete Sorry to hear of your difficulties. I'm a little confused. Did you have a trial before getting the permanent implant? If so, did the morphine work well? My trial with morphine produced no pain relief. I had a second trial with hydromorphone that did a good job of reducing my pain. That convinced me to get the implant. I hope you are able to find relief somehow.

@jeffrez1662 This message needs to go to... @laura1970 I'm not part of this discussion topic.

I'm in exactly the same position, the pump has turned into a nightmare. I had it removed, and I'm in more pain from the scaring. The pump had me doped up all day long, I didn't notice it until family and friends told me I was a mess. I could go on and on about the negative aspects of a pain pump. Then you have no recourse legally when things go south. I was nothing more than a "cash cow" for the doctor and hospital. I'm living in a nightmare to this day.

@jeffrez1662 Oh no! How horrible! I’m so sorry you’re trying to cope with this nightmare. I hope you have been prescribed oral medication such as Dilauded for your pain. Is there another neurosurgeon who could help you? I’m terrified by situations like yours and don’t know what I would do! As it is, my pain becomes so unbearable. I’m stuck at home and can’t even do anything other than sit in my office chair with the edge of my hind end hanging off the back so nothing touches me OR I’m in bed. I can only lie down on my left side because any other position is so excruciating and causes my legs to go numb. I will NEVER understand how and/or why our doctors who take an oath to “do no harm” can sit back and watch us suffer. That is not care; it’s torture. What are we supposed to do?!!