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hope your pain pump never fails

For those of you who may have intrathecal pumps implanted like me, pray yours never fails.
At the end of October I was surprised while in my quiet little bathroom to hear my pump alarm sounding. In the 9+ years I've had a pump that has never happened, and frankly it scared me so much I didn't know what to do. I went into the doctor the next morning and they immediately checked the pump log. My pump wasn't empty, but the logs showed it had been malfunctioning for a couple of days. Because my hearing isn't the greatest and with normal household noise, the alarm had been sounding long before I heard it. When the dr contacted Medtronic they said nothing could be done; that the pump needed to be shut down and would need to be replaced. So now I had to be put back on oral meds to takeover for the pump. I figured surgery would be right away, but I came to learn I couldn't even see a surgeon for over a month. My pain was out of control, but with surgery on the horizon, I figured I could bear it. The surgery went fine, but as I'm coming out of anesthesia, my husband said "I have bad news; the pump all went fine but there's no morphine in it, just saline." You can imagine my reaction. I came to find out that I had a granuloma on my catheter, blocking its ability to function. For those who don't know, a granuloma is a group of cells that attack things they don't think belong in your body-- like my catheter. Kind of like white blood cells attacking infection. I'm still not clear why this next part happened but have to rely on my surgeons reasoning. Instead of just tying off the old catheter and replacing it with a new one, he chose to fill the pump with saline and take an MRI of the blockage, then give the saline 3 months to attempt to push out the granuloma, do a 2nd MRI to see if it has cleared. If it has, then they will proceed with filling the pump with morphine again. If not, then i will have the surgery to have a new catheter inserted. Sounds simple enough; right? Well, let me tell you, my life has been nothing short of a nightmare since this started. Trying to reproduce the same amount of pain relief provided by the pump is not a simple task. I am now on week 5 since my surgery and my doctors have still not been able to control my pain. I have lost 20 lbs., can't sleep, can't concentrate on anything, and all I do is cry. Frankly, I have even considered overdosing just to put an end to it all, but I know I could never do that. They have now made medication changes 4 times and I'm no closer to having my pain controlled than when we started. All I can say is, pray you never have to experience this situation.


  • PlumbTuckeredOutPlumbTuckeredOut Philadelphia, PAPosts: 325
    edited 01/11/2015 - 5:38 PM
    I don't have a pain pump and actually just started on the tolerance building of opiates but I keep reading the forums to know what I need to be prepared for. I had been wondering about all the possible complications of pain pumps and I was only thinking of those mechanical things and hadn't considered my own body attacking the mechanism.
    I get by with a little help from my friends but certainly no family and I cannot imagine what I would do if something like this happened. I try to tell myself that I'll handle it when and if it happens.
    I started with the whole pain thing with an injury when I was 8 years old. I've always advocated for myself but it is so hard with surgeons and insurance companies- I think they are tied for first place of difficulty to get through to.
    I wish there were something else I could do or say but I don't. I'm not going to say any of those hokey things that people say but I will encourage you to reach out to social relations. Being with people you care about and talking to them can help significantly with the depression that accompanies the pain. And depression will make the pain experience worse. Feel free to message me but realize that I am not good at navigating this site so I may not be right back to you! I'm thinking about you and hoping for start finding some relief soon.

    Two roads diverged in a wood, and I took the one less traveled by...... (Robert Frost)
    I still don't know if I should have taken the one that said, "Caution! Dead End" (Me)
  • As a man getting ready to have my first pump after 6 fusions and failed back syndrome (and a lot more) this scares me to death. At first as I read I was upbeat thinking HEY! She had 9+ years and no problems? I am 66 so I won't even live that long so for ME, well, I would sell my very soul for 9 years of ANY relief since for the past year, I have been where you are NOW. I hope with all my hear that something, ANYTHING comes along to help you. I know how you feel, so much so my wife hid any weapons in OUR home (I am a 4 times wounded former USMC combat vet, NOT a whacko- well, I don't THINK anyway?), and all I do of late is contemplate a way out. I just love my wife too much to act on it....I will hope all my best hopes & wishes for you and your husband whose heart i KNOW must be breaking for you as well,
    Fusion With Hardware C5/C6
    Fusion With Hardware L3 THROUGH S1
  • For the 2 that responded to my text about my pump failing, thank you for your kind words and concern. It is now Feb and I'm not much further progressed since my last post. I am currently taking 100 mg of extended relief morphine every 12 hours, along with 30 mg of hydrocodone to take every 4 to 6 hours. This seems to be giving better pain relief for at least the first 9 to 10 hours but usually about 2 or 3 hours before the next dose is due I start to notice the discomfort returning. The other thing is it is causing me considerable drowsiness. I guess its a trade off. I still feel like my doctor isn't hearing my concerns or being of much help. I even contacted Medtronic in an effort to gain some guidance or help with my frustrations, and while they were very kind and understanding said they were just not in a position to help me and that this is a medical issue between myself and my doctor. They have for the 2nd time now suggested I find a new doctor and I am giving this serious consideration. When your doctor is no longer willing to listen or take responsibility, then it's times to find another doctor. While I know he is a busy man, I pay for my monthly visits just as other patients do and expect to be given his attention. For the 9 years when I was doing so well on the pump, he was great, but now that more serious issues have arisen, which he admits he has never encountered before, he has dropped the ball. As much as I like him, I am very disappointed. Hope your pump works great for you Old Marine. You won't know how to act once your pain is under control. Just be patient because it takes time to get the pump adjusted to a comfortable level for you. Best of luck.
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