I am officially bionic. I even have the remote control to my body to prove it!
The thought of a metal pump implanted in your stomach, isn’t an idea anyone would jump at. Becoming bionic was never part of my plan to survive the illness that took my body hostage years ago. I tried the “I do not negotiate with terrorists” mentality for many years. But as the years go on, you start to do what you have to, to survive. For me, like many auto immune patients, pain has always been a big factor (auto immune = inflammation = pain = misery). When I got down to 96 pounds, couldn’t sleep, couldn’t eat & hurt all the time, I was ready to negotiate.
PMC says: Pain is one of the most common reasons patients visit their doctors. A variety of international studies have estimated that between 10.1%-55.2% of the population are afflicted with pain.
When my new pain Dr insisted an intrathecal pain pump was the way to go, I took to google to research it. But finding information on how it worked for other autoimmune or neuroimmune patients was almost impossible to find. So in case anyone is considering this option, here are the pros & cons of getting your bionic on.
Wait, what the heck is an intrathecal pump?
I have had a lot of people ask me what IS an intrathecal pain pump? It sounds like a part in the Mars Rover. My own sister came to visit & was shocked, she thought the pump had been sutured to the outside of my stomach. It’s confusing for sure. Picture a round metal device that can hold a small amount of highly concentrated medication. They cut a 5 inch opening in your stomach & implant it under your fat. Then they cut a 1 inch opening in your lower spine & thread a small catheter into your spinal column & around your side, connecting it to the pump. The pump gives you microscopic doses of medication (Dilaudid, Morphine, etc). Because the drugs are going right to the pain receptors in your brain, you bypass the blood stream & stomach so you often have fewer side effects & need a much smaller dose.
Trial Pro: No Dr will cut you open, stick a pump in you & hope it’s the solution. They do a “trial run” first. Under twilight sedation they thread a tiny catheter into your spinal column & then use a stitch or two & tons of tape to keep it attached to your back. It connects to an external pump you carry around your shoulder.
Trial Con: It wasn’t easy to bend with the tube & that much tape around it but it wasn’t painful. They increase the rate of the medicine slowly during the trial (5-14 days) to see if it will give you relief, which means having to go back to the Drs office every few days (definitely a con when you feel sick). If it helps your pain by 50% (that’s the magic number you have to say so insurance covers it), you are scheduled for the full surgery. They don’t taper you down off the drug, the catheter is simply removed. I am highly sensitive to medications so I felt awful the first day off of it, but it passed.
Pro: You have now found something that helps you. That’s huge. If you take medication & hot showers & lie in bed & all of that barely takes the razor sharp edge off of the pain, you know how incredible relief would be.
Con: Surgery terrified me. It isn’t easy even if you are completely healthy. Now take an autoimmune patient that already feels horrible & reacts violently to everything & put them under anesthesia they have never had before, cut them open in 2 places, implant a round metal pump in their body & then sew them back up. With a small incision in your back & a large one across your stomach, lying down or getting up was pretty painful the first few days. It’s all a big con, I won’t pretend otherwise.
Pro: The surgery doesn’t require a hospital stay, which is a big plus. Mine was done in a surgery center, in & out the same day.
Pro / Con: My Dr “broke it to me” with sincere concern on his face, that I was thin (Um, duh!) Too thin to have the pump put in my lower back, it would have to go in my stomach (you get to pick the side). After living with it awhile, I am relieved that wasn’t an option. If you sleep on your back, it would be very uncomfortable to sleep on. If I had more fat the pump probably wouldn’t show. But as it is right now, it shows a lot. You can’t see the metal, it’s just a big lump the size & shape of the pump. I think in time this will go down a little more. My family jokes it now looks like I have abs bc of where it’s placed. I don’t like it sticks out bc its still uncomfortable to bump it but I don’t really care it shows. The previous pain pump I was using had tubes & needles in my arm & an external pump I had to carry around 24/7, this is trading up, no doubt.
Pro: My pain Dr is rated one of the top Drs in the country & told me he has seen these pumps change people’s lives over & over again. He has a severe migraine patient who had to go to the ER 3-4 times a week. Of course the ER thought he was drug seeking. My Dr believed he was truly suffering & decided to do a trial with the pump. The man never had to go to the ER once during the trial. When the trial ended, he wound up right back in the hospital again.
There was another young patient in the office who had Reflex Sympathetic Dystrophy (RSD). He was a younger guy & the severe pain he was in was written all over his face in bold type. I saw him again 2 days into his pump trial & for the first time, he didn’t look miserable, he moved differently, he smiled, it was stunning.
Con: The battery in the pump will probably die in 6-8yrs. Which means I will have to undergo another surgery to replace it. That’s a huge con, no way around it. But 6yrs of pain control, versus a few wks recovering from a surgery (that will be much easier the next time around bc I don’t have to endure all I had to this time) well it really isn’t a big con to me right now. Ask me again in 6yrs.
Pro: You can potentially get a much higher degree of pain control at a fraction of the dose of drugs you might be taking now. I was on a different external pain pump previously. The drug had to go through my whole blood stream which means we have to get much higher doses bc only a small percentage of it hits the pain center of the brain. I am now currently getting 1/24th of the medication I was on before. Yes, that’s not a misprint, 1/24th!
Refill pros & cons:
Con: You will have to go to the Dr & get the pump refilled.
Pro: After being on the pump a few months, they can increase the drug concentration (you may have to ask about it, I did). They fill the pump with a higher concentration of the medication so you get more time between refills. It can be anywhere from a few weeks to 6 months, depending.
Pro: Refills are simple, really fast & not at all painful. They insert a needle into your stomach, into the pump & inject the medication. It didn’t hurt at all & bc it is such a fast process most Drs offices will fast track you in & out.
I am obviously still healing from the impact of the surgery but without a doubt I can say I am getting better pain control.
Clinical Journal of Pain conducted a systematic review of 4 articles on the effectiveness and complications of programmable intrathecal opioid… delivery systems for patients with chronic noncancer pain. ”Two articles reported the proportion of patients with ≥50% improvement in pain at 6 months (38%, 56%) and 2 at longer follow-ups (30%, 44%).”
Con: The most commonly reported permanent drug side effects were nausea/vomiting (mean rate weighted by sample size=33%), urinary retention (24%), and pruritus (26%). Catheter problems were also reported commonly. Rare but serious complications included intrathecal catheter tip granulomas.
Note: Because you test this out before they implant it, any side effects to the drug should be apparent before the full surgery is ever done. My Dr also told me granulomas mostly occur when the Dr has the pump concentration set too high.
Pro: The pump is set at a constant rate but you also get something called a “bolus”. You are given an actual little remote control that you put up over the pump & anytime you need it, you can give yourself an extra dose of medicine. Your Dr will determine the dose & how often you can have it but simply knowing you have the tool to get extra relief when you need it, is a gigantic “pro”.