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Pain pump
  1. #31
    tassia123 is offline New Member
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    i would love to talk to someone who has been thru pain issues or pump implants. i will leave my email to get in touch more privately. i have had a heart attack, back and shoulder surgeries, head on car accident breaking multiple vertebrae, in trauma icu 8 days and physical rehab..and breast cancer..i should probably be dead but lived thru all of it and terrified of pain pump. with my luck it will put me in wheelchair.
    thanks for posting all of your experiences, it gives me a little more insight.. btw i tried the neuro stim. and it was a nightmare for me
    so running out of options. on many meds including fentanyl, oxycontin, roxicodone, valium and other heart and thyroid meds..most would not walk on yhese..i don't even notice them and they only take the edge off pain...anyone with other options??
    Last edited by Anonymous; 07-28-2013 at 02:36 PM.

  2. #32
    mamakelly2 is offline New Member
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    I had the pain pump pump for 5 1/2 years and it works great if you get enough medication going into it but my problem was the higher they went with it the sleepier I
    got plus you build a tolerance for it so it has to go up higher to help you. Mine quit so the Dr took it out.

  3. #33
    kickers238 is offline New Member
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    I had a pain pump put in Dec 2010. Right away I got a horrible infection and it was treated with a PIC line and I administered the meds myself. They did not think the infection would go away but it did and shocked all the doctors. Lately, the catheter is hurting very bad and the area on top of my pump is swelling. Is is HUGE. When people see it, they turn their head because it makes them sick. I went to the doctor yesterday and he said it did not look infected and my only choices was to live with the pain or take the pump out. I was close to suicide before the trial and the pump truly gave me my life back but now I am worried as to what is going on. The PA pulled out some fluid and it would not stop coming out. It was pink in color and she truly believes either I have another infection or that my body truly never got over the initial infection. I told her from time to time I get bumps like I have been bitten along the incision and it turns red for about a week and then it goes away. She is truly concered. Has anyone else experienced this at all? If so, what happened-what should I do? I cannot go without the pump, but the pain from the pump is also killing me as well. Someone please help me.

  4. #34
    kickers238 is offline New Member
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    I would not mind talking with you about what I suffered through with my pain. I was a runner and also in karate and all of that stopped in an instant. After three years of suffering with the worse pain imaginable, I was close to suicide until I finally found a doctor that truly cared and long story short, I decided to get the pain pump. Once they had me on the correct dose, my life turned around and I feel normal again. You still get breakthough pain from time to time and you have limits in life, but at least I am not crying and wanting to die anymore. But if you want to know more, I would be more than happy to discuss the pros and cons of the pump if you like so you can make the best decision for you.

  5. #35
    kickers238 is offline New Member
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    I would not mind talking with you about what I suffered through with my pain. I was a runner and also in karate and all of that stopped in an instant. After three years of suffering with the worse pain imaginable, I was close to suicide until I finally found a doctor that truly cared and long story short, I decided to get the pain pump. Once they had me on the correct dose, my life turned around and I feel normal again. You still get breakthough pain from time to time and you have limits in life, but at least I am not crying and wanting to die anymore. But if you want to know more, I would be more than happy to discuss the pros and cons of the pump if you like so you can make the best decision for you.

  6. #36
    kickers238 is offline New Member
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    [QUi would love to talk to someone who has been thru pain issues or pump implants. i will leave my email to get in touch more privately. i have had a heart attack, back and shoulder surgeries, head on car accident breaking multiple vertebrae, in trauma icu 8 days and physical rehab..and breast cancer..i should probably be dead but lived thru all of it and terrified of pain pump. with my luck it will put me in wheelchair.
    thanks for posting all of your experiences, it gives me a little more insight.. btw i tried the neuro stim. and it was a nightmare for me
    so running out of options. on many meds including fentanyl, oxycontin, roxicodone, valium and other heart and thyroid meds..most would not walk on yhese..i don't even notice them and they only take the edge off pain...anyone with other options?? Last edited by ddcmod; 07-28-2013 at 02:36 PM. OTE=kickers238;412846]I would not mind talking with you about what I suffered through with my pain. I was a runner and also in karate and all of that stopped in an instant. After three years of suffering with the worse pain imaginable, I was close to suicide until I finally found a doctor that truly cared and long story short, I decided to get the pain pump. Once they had me on the correct dose, my life turned around and I feel normal again. You still get breakthough pain from time to time and you have limits in life, but at least I am not crying and wanting to die anymore. But if you want to know more, I would be more than happy to discuss the pros and cons of the pump if you like so you can make the best decision for you.[/QUOTE]

  7. #37
    MarcPierre is offline Banned
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    This pump is really effective and it

  8. #38
    litchi123 is offline Junior Member
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    Last month my father has met with an accident and he was suffering my severe pain in the spinal cord, at that time the doctor has allowed him to use the pain pump and that really worked for him, his pain just got down and we haven't seen any allergies from that.

  9. #39
    adalinaabella is offline Banned
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    This is the first time when I am gather any information about this...

    I assume it is painful...

  10. #40
    jimwnc is offline New Member
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    My brothers wife also uses a pain pump and still does, but sometime back a few years she developed something like Meningitis , only later to find out that the implant became infected. After the infection was under control, she had another implant for pain. I would like to try it myself as I have chronic pain in my lower right back and right leg for many years now, that may have been from an auto accident. My doctor will only give me Tramadol and that hardly does anything at all for pain.

  11. #41
    lisaha52 is offline New Member
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    Default pain pump patient

    I have had a pain pump with morphine and babuvcaine. At first it was just morphine but would not reach the pain in my calves so the numbing med was added. I had trouble 2 times now that has taken me into surgery . It was leaking and had a bulge in the catheter. And catheter came loose once. Now I still have some meds for break thru pain but when this pump stopped working on a Friday night I went into withdrawls so bad I literally wanted to die .I was going nuts no meds by mouth or two trips to er helped at all. I was told if they would of gave me iv pain meds it would if worked but the hospital would not help me cause I was seeing a pain dr . And my pain dr. Would not help me said he would not come to hospital he worked 9-5 at his office . He finally got on phone after hours of arguing with answeri ng service and he threatened to just take it out. I had to go thru these withdrawls for days and then travel to another state to see him. He seen what was wrong scheduled me for surgery gave me one shot of fentanyl and I was good til I got to pharmacy to get patches until surgery. I would not advise any one to take fentanyl but in this case I had no choise. I have never been thru anything so horrible in my life. I could not belive no one would help me they treated me like a drug addict . I fear all the time it could happen again. But what I want to know is has anyone ever come off a pain pump after being on it. It helps me so much but I am just so scared I will have a problem with it and have to go thru that again. The dr. Should of helped me sooner but he refused

  12. #42
    Angels15 is offline New Member
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    First of all, that is absolutely horrible and even more horrible that the doctor wouldn't help you.I'm so sorry that is the most horrible feeling ever. I had to go through go something similar and I had such bad withdrawals I could not drive for two months see straight or hardly even get out of bed except for to go to the bathroom. and I was treated like a drug addict too which was not the case. it is hard for us chronic pain people because we get the stigma of being a addict and truth being not all of us are. I am now in the process of getting ready to do the pain pump trial on the 27th and am praying that I can get off all theven oral meds. I have not yet come across your specific situation do you know if that happens often?

  13. #43
    ChfCluso is offline New Member
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    I am a 1% person when it comes to opiates working to give me ANY relief from severe chronic nerve pain in back, leg foot...Opiates do work but only at very high dosages. This is not a new thing that happened after my injury 20 years ago, but all my life I've had to receive higher doses to even dull pain in my body. For example, at 6 years old, visiting the dentist for a common filling would take 5-6 novacaine shots for just 1 filling & that only dulled it enough to be able to stand the drilling. No Dr. Ever believes me until experiencing my bodies resistance to opiates.
    I've had 3 major surgeries, I actually woke up during my 2nd one to intense unbelievable pain, thankfully they hit me back under quickly. But, in dealing with pain management, every Dr. Wants to treat me as "normal". But I'm not & when I explain , I am then labeled as an addict or pill seeker. NO WAY, I wish 1 pill could knock me out, but no such lick.
    Anyway, not to go thru my whole sad story, I recently 3 months back had a pain pump installed, even though every test beforehand was a failure. But, this is my last chance at some kind of life, so I went for it, we decided to try PRIALT/Ziconotide, BIG MISTAKE,they kept turning it up & up because I was getting no real relief & soon the side effects made me so sick I wanted to die, really, that's how bad they were/are, so now the Dr. Is trying a failed test drug, Dilaudid, the PRIALT will be out of pump NY Tomorrow 12/27/16, they r going to fill it completely with Dilaudid & turn it up, even though I am already st .8 mg, my Dr. Says most people get relief at .2-.4 & can't go any higher cause they sleep all the time, I have no relief at .8 & I cannot sleep due to bring in severe pain 24/7.
    If the Dilaudid doesn't work, zi got my Dr to PRI to try FENTYNAL, which has always work well for me at high doses, even now I use 100 MCG transdermal patches changed at 48 hr's with the Dilaudid in pump continually drop .8 mg & still NOTHING!
    But, with FENTYNAL st least I have some hope. Been checking & if FENTYNAL doesn't work I want him to very Sufentenil which is normally only used during surgery, but remember, I'm not normal.
    I was just wondering if anyone might have a ray of hopeful wisdom on other things to try?
    Bearinind over 20 years I have tried everything on the market & many that are not to try & end my own personal hell.
    Right now the pump area is hypersensitive to pain, my entire body joints are aching, headaches, etc...And of course, NO PAIN RELIEF AT ALL & I'm now taking Dilaudid pump continuous drip at .8 mg hr, (to b turned up tomorrow), alsi taking, Norco/Hydrocodone 10/325 1 x 4 hr's, 1Soma 350 mg 1 x 6 he's, Lorazepam .5 mg x 6 hr's, & FENTYNAL 100 MCG x 48 hr's, plus every OTC I can take.
    This has been a 20 year stay in the hell of severe chronic pain, I have suffered, but worse, my family & those I love have suffered. I can't even take my wife out to dinner because my Dr.won't give me any BREAKTHROUGH meds, like Actiq suckers I used years ago that worked great for breakthrough pain, just use the sucker until pain under control & put it in a ziplockbti use when the pain trued to rise back up. But, my Dr. No way...he says to take extra Norcos, if I do that I run out early, I asked him about that & could he write me a small amount of Norco pills, like 20 for a month, answer, "No, just use your norco & when I said I'll run out early he said, just don't take them as often when your pain is lower???? And when would that be- Never...
    For 20 years I've done everything asked of me from. Meds to doing my PT faithfully even though doing the exercise hurt so bad it made me nauseated. I've had 3 major surgeries & my neurosurgeon SATs nothing more can be done & I've been under far too many hours, we're talking 12-13 he's per surgery & he wants to save one in case I ever need it. So, I've tried experimental procedures, like frying discs to seal them, killing the nerves, Im talking everything knowknown to mankind & I am at the end. I question my Dr. As to why try meds that have never worked before, I understand intracathdral into the spinal canal is different. But, why make me suffer. I have a friend with a pump, his Dr. (in same group) used Dilaudid & turned it up quickly to get his pain under control, yes it made him sleepy all the tim we but his pain was down, now his doc tirated his Dilaudid down until they found the sweet spot of pain relief & no sleepiness. My Dr. Uses the opposite approach. I'm in Severe chronic pain so he starts at the lowest possible dose, which does 0 & leaves me in horrible pain. Then he slowly turns it up, knowing my system responds only to high dosages, so for 3 months now after the pump implant, I' mactually in more pain now than when the pump was implanted. PRIALT has been a nightmare causing greater pain, even at the pump site. I can't sit (on 4 pillows) for more than a few minutes, then I stand with a walker until I can't stand anymore & I sit backdown (I'm really losing my mind because there is no relief, 24 he's a day,PAIN, PAIN, PAIN)
    And, my Dr. Wants To go slow. I understand thatthat with the PRIALT, but no opiate I've taken & I've tried them all work unless they are at high doses.
    Anyway, I'll stop now, you get the picture.
    Any suggestions would be appreciated.
    THANKS IN ADVANCE!
    EVERYONE BE WELL & FREE OF PAIN!
    lisakyler likes this.

  14. #44
    ChfCluso is offline New Member
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    Hey, prayers for you. But, I have used FENTYNAL for years & it is the ONLY opiate that works. So, easy on the "don't use FENTYNAL line, OK?" Yes, only use it if you have to & I have to, been resistant toopistes all my life. 5-6 novacaine shots for a filling at 6 years old. Im one of the 1% that opiates only work on in high dosages. And, I've never been knocked out or gotten any successful long term pain relief from any opiate. FENTYNAL at least helps, & gives me some hope. My Dr has Dilaudid in my pump now after trying PRIALT til he nearly killed me with all its side effects & absolute 0 pain relief.
    I got him to promise FENTYNAL in the pump if/when the Dilaudid fails, I'm already at .8 mg, he says most people get relief at .2 -.4 mg & can't stay awake over .5, well I'm awake all night & day at .8mg & at 0% pain relief (& I mean 0%) & its being reprogramed/refilled totally with Dilaudid tomorrow. However, Dilaudid failed in the bolus test at 2 mg to get the pump & even though I'm trying to stay positive it looks like its going to fail in the pump going into my spinal canal at a continual drip as well.
    I wish with all my heart it were not so, but my ONLY relief I get right now is from my FENTYNAL transdermal patch 100 MCG x 48 hrs, along with Hydrocodone 10/325, Carisprodol/Soma 350 mg x 6 hrs & .5 mg x 6 hrs of Lorazepam for anxiety caused by severe pain. And every OTC pain reliever I can find & take.
    Also, If the FENTYNAL doesn't work thru the pump I have researched & found that there's 1 more thing to try before cashing in & pulling the thing out (they named it right "pain pump" mine causes me pain all the time, sitting, standing, hittint it in everything. I'm developing a sore on the point of the outer edge that my pump specialist is worried could ulcerate, I said "Talk to my Dr." Protocol for implanting is 1/2 inch of skin from the outside to the pump pocket, Well, My pump is just barely under the skin along the top edge & it sticks out & I hit it on everything my butt used to brush by. Anyway, if Fentanyl fails, I found some hope in research I found done at Oxford & a couple other small studies, concerning use thru the pump of "Sufentinil", which is usually only used during surgery for its potency/strength. (A bit higher than FENTYNAL alone, but the studies patients definitely had very good respone) Perhaps the mixture will work since they'd be mixed for about a month in the change over. But...
    I just can't understand why all these docs Ive ben reading about here (I thought I had the only non-caring, My way or the highway dictator doc. All my great docs from the bay area of CA have retired, & this Dr. & his group are the only pain specialists in my small central coast home area. I've always asked myself, "Why are these "pain" dr.s so seemingly uncaring concerning our pain?" I think, It can only be that they themselves have never truly experienced it. You may think you know about pain, (No its not like a headache, or a stiff muscle backache at all)
    I thought I knew about pain before my accident, but I knew NOTHING of how deeply severe pain could become & literally destroy you & your families lives, &
    drs are supposed to help, especially "pain management" docs. If only there was some way they could spend 1 year of their med training in severe chronic pain, then they'd make great docs for pain & truly care about us & others in chronic pain.
    And, So, by tomorrow night, since it takes 10-12 hours for the new programing to actually start putting the new dose out into the spinal canal, at least that's what my pump specialist & research tell me.
    If I don't get at least 40-50% relief, (50% is Medtronics measure of a "Successful Pump Implantation Result"): (Medtronics largest supplier/maker of Pain Pumps in USA)
    I would be ecstatically happy with 25%,
    I've had 0 to this point & just hanging on.
    So 25% would feel like heaven to me! But, if not, I'm on the phone getting the FENTYNAL switchover set up immediately, since it takes a month to order & get the FENTYNAL in as the Dilaudid goes out.
    Anyway, I'm wishing & praying for you & all people in pain to find a path to wellness & pain relief!
    lisakyler likes this.

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