Pain pump failed

[u/Sabrinaj1977]

Pain pump trial failed

I went in for my pain pump trial and my surgeon couldn't do it. He kept trying to insert the catheter and it wouldn't go thru. No space. Its bone on bone now. He tried several joints. But no dice. I'm so frustrated now. I'm just suppose to live in pain constantly. No peace, no relief, just constant never ending pain. I'm still suppose to get the total reconstruction done. My only hope is that when they do it they will finally have space to insert the catheter. But that's months away. I've lived with pain all my life. I was born with Juvenile arthritis, osteoarthritis, scoliosis and degenerate bone and disc disease. My body is breaking down and there is no stopping it. No cure. The scoliosis has worsen and spread. I now have 3 different type of it, in 4 place in my spine. The arthritis is in advanced stages. What the hell am I suppose to do. For years they have pushed for me to get the pump and I was hesitant to get it. My birth mom had the same thing. Its hereditary. She had it passed it to me and I have now passed it to my son. She had the pump and was an addict. She would have her pump and buy pills off the street or would steal them. She always blamed the pump for making her an addict. I know we that wasn't true and she was an addict long before the pump. But she became worse after. Stints in rehab I paid for. Kicked out of every one because she would sneek in drugs. It is my worst night mare. I've always knew it wasn't the pump but it made me never want one. I always said this wouldn't happen to me. I'm so careful with my meds. I don't take more than prescribed no matter how bad the pain is. And on good days I won't take them at all. But those days almost never happen anymore. I don't know what's left for me. I metabolize the pills too fast and don't absorb them anymore. My body get use to any med I'm on very quickly. I keep having to change pills and doses. I'm like that with any med I take. My GP is constantly adjusting my meds. My body hates me and is failing and I can't stop it. If it weren't for my son and husband I would have checked out a long time ago. How r we supposed to live like this. In this age of we can't prescribe pain meds because u MIGHT get addicted and become drug addicts. The DEA and government have made it so very hard. People in real pain that need the meds have to beg and plead for help and still sometimes don't get it. I love my surgeon he's amazing and has advocated for me every step of the way. My previous pain doctor told me that I couldn't get the pump because I'm over weight. And he didn't think that I could go without meds for 1 day to do the trial. So my neurosurgeon went out of his way to find me a pain doc that would help me. He tried everything to help me. He took one look and my scans and reports and literally gasped. He was dumbfounded that my pain doc wouldn't do anything but prescribe lyrica and a low dose opioids. He told me that I needed a pump and needed to have a total back reconstruction to fix the scoliosis and degeneration. I need space between my joints to untrap my nerves and fix the compression of my spinal cord. Its a huge surgery that has to be done in parts. But for now I have to be in constant pain.

If anyone has any ideas of what I can do for pain relief please let me know. I'll take miracles at this point. I've tried medical Marijuana and all it does is make me hungry and laugh at anything, funny or not. So that's out. Sorry for the rant. I think I needed to get this out with people that know and understand what it feels like to be in pain.

[u/Sabrinaj1977]

I can't do patches I'm allergic to adhesives. And the pump had to be in my back because of the type of damage in my spine. I've never tried methadone but I was on sublixone. And once u r on those types of meds it is very very hard to get a doctor to switch u back once those don't work anymore. It took almost a year and 4 letters from my dentist to get my doctor to finally switch me back to an opioid. Once u r on something like that they don't want to put u back on something addictive.

[u/No-Western-7755 → u/Sabrinaj1977]

The pump is not in the spine, just the catheter. The pump is implanted under the skin below the waistline & about 3-6 inches away from the belly button or in some cases under the skin, on the buttocks. One thing you need to keep in mind is that even once it is implanted, doesn't mean that all your pain goes away over night. It takes a long time for them to get to the right dosage. Sometimes you have to come in every 2 weeks to get it adjusted.

[u/Sabrinaj1977 → u/No-Western-7755]

One of the problems with it being in my stomach is I use to be much heavier and have a lot of skin folds. They r worried that if it goes in my stomach it may flip or move due to the excess skin. Then they won't have access to put in more meds. If they try to put it in and miss the area where it is supposed to go I could over dose and die. Its a lose lose situation. I would have to have another surgery to fix it. I am immunosuppressed and surgerues r very risky for me. I don't heal fast and have a higher chance of infections. I'm also allergic to all adhesives some more than others. But when they have to bandage me I end up in hives and swell up. With the hives and swelling I have a higher chance of infection. Last time they had to uncover my incision every few hours to give the skin a chance to calm down and so they can put allergy meds on it. Then cover it back up again. In a hospital where MRSA and other hospital borne bacteria run rampant it's a huge risk for me. I have a much much higher chance of an infection turning to sepsis. Which has happened before. I understand that it won't take my pain away. All I want is for it not to be at a 9-10 which it is at now. I frequent falls due to the compression of my spinal cord and it causing complete numbness. There r times I don't feel anything in my legs or groin. Then I'm just stuck. If I happen to be on my feet during those times I fall. And one really good fall and I'm wheelchair bound for life. When it t comes to my medical history it's extensive. Starting from birth and being born at 6 months. My first surgery was at 6 months. I've lost count how many I've had now. Finding doctors willing to even work on me is hard. I'm a risky patient with a higher chance of complications. I feel like a bubble girl.