How long to regulate a Morphine Pump?

hammertimeinaz Community Member March 08, 2010
  • I got my medtronic pump implanted 8 weeks ago and the forst 3 weeks were amazing!  I had a zero pain level for those 3 weeks.  When I was living with 7-8 pain level while on 100micl of Fentanyl, 5ml/day of 20mg/ml ethyl Oxydose for breakthrough pain.  Now, the pain has krept back up to a 5-6 and I think the placment of the pump is causing me alot of pain but the doc will not acknowledge that.  I know there is some tweaking that has to take place but  I am not allowed to take anything for  breakthrough pain which is now chronic again and I can only get pump adjustments every 2-3 weeks because that is what I am told Medtronic allows.  Any experienced pump users would greatly help!  thanks! Rob

6 Comments
  • Cathy
    Mar. 26, 2010

    I have had my pump since Jan 2003 things were good..I would take pills every once in a while for break through, normally when the weather was getting bad or when I would do something stupid as I hate sitting still..I busted up my cervical area 16 years ago and as a result the rest of it is falling a part so I kept accept the fact that I have to take it easy..However...

    RHMLucky777

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    I have had my pump since Jan 2003 things were good..I would take pills every once in a while for break through, normally when the weather was getting bad or when I would do something stupid as I hate sitting still..I busted up my cervical area 16 years ago and as a result the rest of it is falling a part so I kept accept the fact that I have to take it easy..However the pump is a great thing when you and the Drs are on the same page..Prior to Jan this year I never really had any problems they kept raising until I was up to 10 a day...A couple of months ago I went through a real grouchy and annoyed period and my friends just thought I was having a difficult time with the pain..Come to find out after having to go in the hospital in Jan 10 and having a bone scan over intense pain they saw that the catheter was completely broke and apparrently was sitting on a nerve..I thought I was dying from all the pain, My Dr new I was in some kind of serious trouble as he had never seen me in the ER..As a result they put that new pump in that is enourmous and gave me the regular dose....I was overdosing right there in the hospital...I had never been through anything like that in my life, I puked for 8 hours even though the nurses were doing everything they could to stop the horrible nightmare..I would'nt even let my boyfriend come and see me..As a result of not haveing any morphine in my system for who knows how long I am on a baby dose of 2 with my percocet as break through...I seem to be holding up pretty good..The biggest problem I am having though is the pump keeps flipping, I sit down and it flips towards the side the other one did not do that..My boyfriend had told the Dr had said when he took out the old one that he had a hard time because there was mesh holding it in..I do not understand why they would not do that with the new one...They are 2 seperate Drs that put in the pumps one in N.M and the other in Miami..Now I am in Austin and am having to find a Medtronic Dr here as the pump is due in Sept.....I really don't understand why these Dr's seem to ignore the fact that we are the patient's and that they need to listen to us when things start to change...I really hope that your Dr will give you some break through as everyday is not a perfect day....If there is anybody else out there that has had a problem with there pumps flipping I sure would like to here from you......Cathy

    • hammertimeinaz
      Mar. 27, 2010

      Wow Cathy, sounds rough!  My Doc just tells me, until we get the morphine level right...no oral meds.  I was on oral narcotics for 28 years and if I can avoid them I would like to but as you said, not all days are perfect.  I was at .2 mg per day of morphine but I just got bumped up to 2.0 mgs per day and am still having pain daily! I just wish...

      RHMLucky777

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      Wow Cathy, sounds rough!  My Doc just tells me, until we get the morphine level right...no oral meds.  I was on oral narcotics for 28 years and if I can avoid them I would like to but as you said, not all days are perfect.  I was at .2 mg per day of morphine but I just got bumped up to 2.0 mgs per day and am still having pain daily! I just wish I could get some relief that made life normal once again.  My Dr. stopped installing these a few years back b/c he found that people who needed them we mainly "Drug seekers" as he put it and put too much of a tax on his time and practice.  I know I am a weekly pain in his ass but I will be until we get this thing right!  I had my pain under control, alright I was on a crap load of dope, but at least I was able to say I had a pain scale of 5 out of 10 regularly, now its 8 and I'm a grump.  I am a pusher like you and have not missed a day of work ever b/c my pain was too intense.  I bite the bullet and make it through the day, come home kill a few cats, strangle my imaginary kids and go lose myself in my hobbies and most importantly have a very loving and understanding wife who puts up with my whining and grumpiness, and now ED Cry.  I hope you and the others out there find the relief that these Pain Pumps are supposed to bring but as of right now, 8 weeks into the process I am NOT at all impressed!  Best of luck! ~ Robert

  • BobinmidMO
    Mar. 08, 2010

    Hi,

     

    I'm so sorry that you're having problems with your morphine pump.  Now let's break the problem down into two parts:

     

    1st:  It's sort of in the wrong position.  My first pump (I'm on my 2nd) was to the left of my bellybutton on the left side and sat above my waistline.  Now while they call it the size of a hockey puck, I...

    RHMLucky777

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    Hi,

     

    I'm so sorry that you're having problems with your morphine pump.  Now let's break the problem down into two parts:

     

    1st:  It's sort of in the wrong position.  My first pump (I'm on my 2nd) was to the left of my bellybutton on the left side and sat above my waistline.  Now while they call it the size of a hockey puck, I think it's a bit larger personally.  When we put in my 2nd pump, this one sort of slid down and now sits right on my waist and even bending over is a real pain in the -well backside that you sit on.  As far as getting it moved, do you know the pump sits in a pocket they first built inside?  It appears something gave and so everything slid down.  I sure do hope for your sake they'll do somethng, but when I commented on this exact problem with my pump a few weeks ago, I was told I'd just have to live with it.  But we're looking at another 5 years till the battery dies and I get a new one.  Now if you can show you doctor how it's causing you physical harm, maybe you'll get luckier.

    2nd, and even more importantly, the rate your pump is kicking out the good stuff.  I personally can't understand why you're going without medication for breakthrough pain.  Even doctors understand that a pump is used for evening out pain levels, but rarely does it get rid of pain all the time, hence the need for additional medications.  Because you're already hooked at the hip with this current physician, about the only thing I can figure is he's trying to make sure you're in a safe zone before adding anything more.  We all know that morphine can have a few side effects such as slowing systems such as breathing down, so doctor's are scared we'll stop breathing altogether, but it's clear your pain levels are not being heard by those in charge.  I'm afraid you'll have to wait another 2 weeks or so till your next appointment, but hopefully at that meeting you'll be able to express (without getting upset) your disapointment in how the pump really worked well during the first few weeks, but now it's simply not keeping up with your current pain levels.  Best of luck, and please keep me posted on how you're doing.  Bob.

     

    • hammertimeinaz
      Mar. 11, 2010

      Bob-

      Thanks for the support!  I pushed my doc to see me sooner than next week so i get to see him tomorrow but I was told that the pump MUST not be surgically moved for 1 year...WTF? It HURTS like a MF and I dont have any cushion for it.  I had to make a custom cushion just for the truck so i could use the x-tra lumbar support without killing...

      RHMLucky777

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      Bob-

      Thanks for the support!  I pushed my doc to see me sooner than next week so i get to see him tomorrow but I was told that the pump MUST not be surgically moved for 1 year...WTF? It HURTS like a MF and I dont have any cushion for it.  I had to make a custom cushion just for the truck so i could use the x-tra lumbar support without killing myself from the excess pressure directly on the pump site.  I was truly surprised that it is taking this long to get things regulated and getting rather disgusted with the entire thing.  My pain level chronically seems to be in the high 6's low 7's and spiking into the 9 and 10 range when I am working out in the yard or sitting for long periods of time.  I have no breakthrough meds and asked but keep getting told we have to get the pain regulated first.  Hell its been close to 8 weeks and since I have had this darn thing and 3 months since I have been off all oral and dermal narcotics.  The wean off was the worst so I dont want to get back on anything orally and screw that up b/c I was hooked for close to 28 years and am glad to be off the meds but I was hoping that the morphine pump would work far better than it has.  It started off great for 3 weeks but has been nothing but a literal and figurative pain in my ass since then.  Thanks for letting me vent.  Hope tomorrow brings better results than just a bolus bump!  Take care!  Robert

    • BobinmidMO
      Mar. 11, 2010

      Good morning,

       

      I know that you're annoyed at the whole process of things and that the speed things progress isn't quite what you had in mind, but how many times have you been told "there is no silver bullet."  When my first pump battery died just before my amputation, I went through months of living hell, but with patience we did finally get a new...

      RHMLucky777

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      Good morning,

       

      I know that you're annoyed at the whole process of things and that the speed things progress isn't quite what you had in mind, but how many times have you been told "there is no silver bullet."  When my first pump battery died just before my amputation, I went through months of living hell, but with patience we did finally get a new pump installed after my chop, and in time we got things leveled out with my new machine and med combo.

       

      If you we're hoping to be oral med free, than I'm scared you're just asking more out of a pump than it will "ever" give.  A pump was never designed to be a replacement for all medications, but instead it's more of a device that helps with other pain solutions as part of a larger package.  You've been told, just as I have that our attitude always will have direct effect on how well this or that option works, and so I'll remind you again just as I have time and time again.  I know you're not that pleased right now, but you'll just have to wait it out.

       

      The next time you're bouncing off the walls, please remind yourself about how you'd be doing if you lived in such lovely countries such as India or Mexico.  Either place and we'd just plain be out of luck for any pain relief.  I refer to this as my "dare to compare" type thinking.  You will get better, but it just takes time.  The more you focus on how much better things are, the better you'll feel.

       

      How long has it been since I slept for 4 hours straight at night?  Oh I think it was back in the 90's.  When was the last time I made love to my wife?  Don't even go there.  And so the list goes on as we look at how our lives have changed, but trust me when we're talking about 30 grand worth of gadet that's sitting inside your tummy, these are options so very few really get, and so meanwhile we have to put up with the problems of getting it all evened out.  You will survive and you'll be better off, but you just have to ride out another storm.

       

      I doubt if you'll find a pump will ease pain to the levels you have in mind without some type of breakthrough suppliment, but maybe this time you'll be the 1 in 100.  So if you have to take a kicker every now and then throughout the day, then take it, and just be glad we have these options too.

       

      We woke up with a pulse today.  Everything else is pure gravy.  You'll make it, trust me, Bob.

    • hammertimeinaz
      Mar. 11, 2010

      Bob-

       

      Thanks for your support!  You make some good points and yes, if we always think about how bad we have it..there is always someone who has it worse!  My appointment went fairly well this am!  Do took my from .8ml of Morph to 1.2 ml without a bolus but that will take 48-72 hours before we know if it works.  As far as moving it,...

      RHMLucky777

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      Bob-

       

      Thanks for your support!  You make some good points and yes, if we always think about how bad we have it..there is always someone who has it worse!  My appointment went fairly well this am!  Do took my from .8ml of Morph to 1.2 ml without a bolus but that will take 48-72 hours before we know if it works.  As far as moving it, doc said lets wait, its still only been 10 weeks, so I'll bite the bullet and everyone's head off at the office, my wife's too and kick a few cats and then hopefully will feel better.  Seriously, just hearing from people like you Bob, make it a lot more tolerable knowing that there really is light at the end of the tunnel.  I found out today that the backlofin (sp?) may be causing the ED and orgasmic issues, which means we will have to flush the pump next time I'm in but we are going to try this boost in morphine to see if it helps with the pain and if it does, and I still have my sexual probs, then we will douche the pump and cut the backlofin in 1/2.  I like my doc but I know he has to follow protocol that the FDA and gov has set I'm just impatient as hell!  I have only missed 2 days from work for this and that was the surgery days and that's been over the past 11 years.  My abdominal sx took me out more time than this has.  I have taken a heck of a lot of time off for docs appts but I sit at my desk and bite the bullet eating Ibuprofen.  Now I'm getting tenitis.  If its not one thing, is another, right!  I hope you are doing OK and that the sun shines bright on your day!  You appear to be pretty web savy so if you wanna grin, check out youtube "itsy bitsy bunny ranch" that's our craziness :).  Thanks again Bob, I really appreciate your support and experience on this!  Robert

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