Intrathecal Pain Pump

@heisenberg34 I also have 6 boluses preprogrammed by my doc at specific times where my pain normally spikes. It is hard to pinpoint exactly how much the pump helps but if I were to put a number on it I would say ca 20-25% relief plus minus? I have an extreme case of crps 2 after I crushed my heel bone in a 16 feet fall from a ladder. My brain replays this crushing injury every day, every morning it feels like my foot is crushed. I think, or I know, I would be bedridden most of the time without my meds and my implants, who all work together in concert to keep this crps beast at bay. But the pump was never able to help me cut down on my orals, in fact I know I need as many layers of relief I can find, so the pump, my abbbott scs and my orals all help get me out of bed. I am rarely under a 7 but I can go as low as 5 on the scale on a good day. Having said all that, two years ago I was barely ambulant and was in a wheel chair. Today I walk almost like a normal person, of course I walk with a lot of pain, but it has given me a new life, where I now can drive myself to appointments and I can give my dog a walk most days. I know I wouldn’t be able to do any of that without the pump, the stim and my orals meds which all help me move around more than I ever could before. I just think it is a dam ahame you get no relief, I am almost convinced it is a wrong placement of the carheter. Which meds do you use in your pump?

@alexandercrps Ouch!! 16 foot fall. Man, that' terrible. My brother-in-law fell through the rungs of an old, wooden ladder about five years ago. He had to get a metal plate implanted in hid foot. He still has pain, but not to the extant that you have.
I am taking gabapentin, tramadol and baclofen for the pain, although I'm not sure that any of them are really helping. I have just started taking CBD/THC gummies to help me sleep. They really help. I have had the placement of the catheter checked three times. Always says it's in the right spot. Who knows for sure?
Thanks for your responses. Much appreciated.

@heisenberg34 hey friend, thanks for your words. It was a terrible accident, I qas trimming my pecak tree and a giant branch came right at me before falling (branches often do I have learned later), I lost my chain saw as the branch literally grabbed me by my belly and threw me up in the air. The branch also tipped me over to my left so I landed with all my weight on my left heel bone, which basically exploded from the impact. I had a bone splinter stick out more than an inch from the back of my heel and long story short: it has destroyed my life. I have 10 screws and 2 metal plates in the said calcaneus bone, I never thought I would walk again. I almost amputated it 4 years ago as I was out of my mind from the pain. It is a grueling experience to go through each day as my brain replays the crushing injury in a constant loop. So I am on 3 x 150 mg lyrica, 10 mg oxy x4, hydromorphone 4 mg x 2, 50 mg amitriptyline plus clonedine in the pump mixed with dilaudid. Then 1 1/2 year. ago I got the Abbott Eterna SCS implanted as my pain no longer was well controlled. I have to say that it sounds as if you likely would benefit from better and a tad stronger opioid in the mix. Tramadol won’t cut it when your pain is at your levels..just my opinion. I appreciate hearing your story, wishing you well and I hope you get better relief in the future

@heisenberg34 ..I too use thc/cbd for the pain and the inflamation. As in your case I also use thc gummies for sleep. I find them most helpful, I also use actual (mostly indica) flower which I highly recommend if you tolerate it and if you can get some sound bud. thc vaping is also effective, both flower and vapes kick in pretty much instantly which is helpful when used to control pain. Gummies as you know often take an hour or more before you feel the effects which can be a long wait when one is in a lot of pain. In any case I just wanted to say that I am glad you can enjoy thc/cbd because it truly is most effective for pain. It works great for my CRPS and for my PTSD.

I have had a Medtronic intrathecal pain pump (non bolus) implanted for many years until I had it removed a while back. I have posted several comments (both plus and minus) about my experience which can be found under my profile if interested. As you folks probably realize, pain relief delivery by pump has several major benefits over oral delivery (in most cases), 1-no mental effects, 2- no or very little bowel effects, 3- high potencies not reasonably delivered orally, and ideally delivery to the exact source of pain, among others. But-oral delivery has one major win over the pump as it goes systemic, thus almost ensuring hitting the pain source and providing relief, where if the pump catheter placement is in error a major part if not all pain relief is lost. Just another thought- using other oral pain relief (especially narcotics) along with the pump defeats some of it's purpose because now those life changing side effects (some are just uncomfortable but others are dangerous) have to be dealt with along with everything else! In many ways I was very fortunate because the catheter placement was accurate, the narcotics and numbing agents were fine tuned for me as an individual along with the pump rate to the point that just this arrangement controlled the pain it was intended for and gave me a reasonably livable life style UNTIL IT DIDN'T (for another time, maybe). Just some thoughts is all-wish you well.

@alexandercrps Good to know. I don't want to smoke or vape anything. I typically take my night time gummy(25 mg CBG; 7.5 mg CBD; and 5 mg THC) about 2 hours before bedtime. It really helps me to sleep. Fortunately, I am in a state where cannabis is legal for recreational use. I may get a medical marijuana license just to be safe.

@alexandercrps Is your SCS helping to control your pain? I have dilaudid in my pump with six boluses. I went as high(including all six boluses) to almost 5 mg/24 hours. The only thing it did was to induce a lit of vomiting. I tried having Clonidine added to the pump, but it did not help. Not sure what to do at this point in time. I tried another SCS about a year and a half ago, but they could not get the lead in the "sweet spot" due to scar tissue.

@heisenberg34 Hi, yes the stim definitely helps albeit not more than ca 20% relief. Before I got the stim I was not able to weightbare all, with the stim I basically learned how to walk again. It manages to stim the very sensitive part of my the back of my heel and ankle to some extent at the relief is enough for me to tolerate to walk again. I got the Abbott Eterna, it is the smallest battery on the market so it is less invasive. Im glad I have it, it’s just one more layer to help mitigate the extreme levels of pain. I’m sorry to hear that they were not able to make the stim work either. It effin sucks to be chronically ill

@bkhc54 I am so sorry. But i can relate to everything u say. Y ou need to go to a pain clinic, U have to get a referral from PCP, or whoever will give it to you. I' have gotten treatment for years. I got a substitute pain doc, & she looked at my diagnosis & said that i must need Dilaudid I couldn't believe it. She put me on Dilaudid pills, 2 mg every 4 hours However, i hate to say it. The horrendous nerve pain, sciatica, 360 degrees, down both legs & feet, toes isn't helped that much, even with the Dilaudid Dilaudid is much stronger than Morphine I live in a suburb of Phoenix & there are pain clinics everywhere. However, if you have a lot of medical ;problems, Pain clinics don't deal with them I wouldn't say that the doctors here, ;listen to you. Can u go to a Mayo clinic ? I can't afford it, but it seems like the best option Please excuse me for typos etc, I haven't been sleeping at all

@laura1970
I already have severe adhesive arachnoditis and have been considering a pain pump. The more I investigate the more I’m seeing it’s not a good idea for someone with AA. Thanks for the post & im very sorry you’ve joined the AA club. It’s a very tough disease to live with and navigate. God speed to you.