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  • Interthecal Pain Pump test GONE BAD

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    Old 02-17-2010, 09:39 AM   #1
    KurtAS's Avatar
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    Interthecal Pain Pump test GONE BAD

    Hello all,
    I went into hospital Monday to have an interthecal pain pump test done to see if it would help prior to having installed. My Pain Doc said I was the perfect candidate based on my disease & issues (Spondylitis and severe DDD.)

    It took the doctor 45 mins to insert the Catherter at the L1. He kept commenting on how "tight" it was. Several time he hit my nerves causing severe pain to shoot down my legs causing them flip around like a fish out of water. Finally he said he had it placed properly and off I went to have the pump hooked up & taken to my hospital room.

    When they asked me to get off the stretcher & into bed, the pain in my entire lumbar was incredible and I could not walk. My legs were also extremely weak.

    The pain continued & much was very constant. It felt like I had a knife in my back. I asked doctor on his 1st visit to me if the pain could be from the catheter "touching & irritating my nerves" ..he said he had placed the cath properly.

    After 30 hours of Morphine being infussed, there was no change in the pain, and I still could not walk. They kept increasing the amount from .4ml an hour up to .8ml. Next time doc came in I asked after that much morphine why wouldn't I feel any improvement. He said I should not be having any pain with that much morphone. He wanted to then add a "numbing agent" along with the Morphine.

    At this point I told the doctor something is just not right & I feel it has to do with the placement of the catherter. His response was that this was just "conjecture" & he can't go by that? He said I have 2 choices, allow him add the numbing agent or end the test & have the catheter removed.

    After 18yrs of fighting my disease, I know my body, my disease & how things felt to me. I concluded it was time to end the test and remove the Catherter.

    Within 10 seconds of the Catherter being removed the pain subsided immensly. The 3 nurses all commented how fast the color came back in my face and I was able to "straighten up" on the edge of my bed. In another 2-3 minutes I was able to stand & walk a few feet with nurse assistance & cane I always use.

    Once the doctor removed the catheter, he left the room and I did not see him again. The hospital called his office & they received the okay to discharged me.

    My question - could a "misplaced" catherter cause the symptoms and pain I experiened? All the nurses who deal with this test daily said they have never seen anyone go into more pain once the morphine infussion started.

    I still believe the interthecal pain pump will help me, but I need more information on what happened. This is very depressing for me as I placed so much hope in this test to getting some of my life back (I'm only 45.) I need my knees and hips replaced from all the arthritis but the orthopedic docs were concerned about me being able to do proper rehab with the limitations from my spine issues. We all agreed on plan to get Pain Pump to help the spine pain & then revisit having knees & hips taken care of. So this really sets me back.

    Obviously, step #1 is to get a new Pain Mangement doctor. But I wanted to get some feedback from others who may know more about the Interthecal Pain Pump & spine. Granted my spine is in very bad shape, so could it be possible that it just can't handle a catheter being placed in it? This doesn't seem right but at this point I'm looking for any answers so I can renew my fight and my get some "hope" back into my life.

    Sorry for long post -- any & all feedback would be very much appreciated. Thank you, KurtAS

    Last edited by KurtAS; 02-17-2010 at 03:47 PM. Reason: Shorten & spelling

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    Old 02-17-2010, 03:42 PM   #2
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    Re: Interthecal Pain Pump test GONE BAD


    I so wish I had something of value to say to help you. I am devastated for you. I'm putting you on my list of folks to pray for and I just know someone will come along and help you with this issue. Just wanted to say, hang in there my friend, and I agree with your thoughts. No one knows your body like you do. It does make me wonder if he misplaced the catheter. Nothing seemed to go smoothly during the placement of it.

    Please keep checking back and keep us posted on things.

    All the best,

    Old 02-17-2010, 03:56 PM   #3
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    Re: Interthecal Pain Pump test GONE BAD

    My mother had a terrible pain pump issue. They put it in and things were fine gor awhile. She fell and they think she dislodged the cath. She had the surgery to replace the cath and like you immediately had increase in pain and weak legs. SHe kept saying something wasn't right but the docs said it was fine. After a few days, she went to stand up and immediately fell to the floor unable to feel her legs. They called 911 and she was admitted. It kept getting worse to where she began to be incontinent as well as bowel problems. My folks told the doc to take the pump out, he wanted to give it more time, idiot. When she came out of surgery from removing the pump, she immediately was able to move one leg and then over time both. She couldn't walk at first and still had incontinent issues. She spent a month in a rehab and then had physical therapy. She has had permanent nerve damage and will never be the same. She can now walk with a walker but not very steady.

    Old 02-17-2010, 06:28 PM   #4
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    Re: Interthecal Pain Pump test GONE BAD

    Dear Kurt,
    Trust your body and keep fighting for what you know is right. You know what's what with your body, you know how you respond to meds, you know what works and what doesn't. I believe you that something was not right with that catheter. It just doesn't sound kosher.
    As difficult as it is to find one good pain specialist, it's even more difficult to find two, but unfortunately you don't have a choice at this point. You have to keep moving forward.
    You sound like you've got a good head on your shoulders, that you're well educated and clear headed. You're going to need your problem solving skills more than ever now.
    It sounds like you're on the right track. Please feel free to vent here, and keep us posted on how you're doing.

    Old 02-18-2010, 05:51 AM   #5
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    Re: Interthecal Pain Pump test GONE BAD

    Thanks for the replies & wishes. Its been 2 days since he pulled catheter out of my spine and I'm just starting to be able to walk upright, at least to the bathroom! Hopefully there is no damage. Left leg little weak but coming back more each day.

    Old 02-23-2010, 07:04 PM   #6
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    Re: Interthecal Pain Pump test GONE BAD

    Hi Kurt, It sure sounds like a placement issue. I;ve had a pump since 2003 nd been deeling with pain since 93 when opiates weren't even used. Like you, my first trial failed, I had a spinal fluid leak and everytime I raised my head i threw up. It took about 6 months to get the courage to try again but this time was a success. I have very real expectations and I'm very happy with the outcome. I've had 3 failed fusions, and some permanant nerve daamage but feel I could be the poster boy for pumps. My hardware still shifts and my spine still grinds, That's something a pump isn't going to fix, But I do get about 50% relief and that is onsidered a succesfull pump. It did take 6 months and 16 adjustments to get back to where I was pain control wise but I no longer had the head fog and cognative problems orals cause. I was motivated, started excercising, lost 30 lbs and went back to work part time. I've used the same BT med the entire time and just had a .5mg a day increase after over 2 years and the balls back in my court to make the best out of my life when i know the docs have done all they can. Yes they could increase the pump, I would have better pain relief but I would also have more side efects I'm simply not willing to deal with. I don't want to go back to being a tater and I kind of like to be able to pee and have everything else work like it's supposed too.

    The pump isn't a miracle cure but it certainly has the potential to deliver a more efective dose with a lot less side effects. I would give it another try. I don't know if your surgeon is the doc that would manage it, but more often than not they aren't. So they don't have the vested interest your Pm does.

    Sorry to hear what you went through, but it really sounds like they placed it through a nerve or into your spine. Ideally the pump test should go into the epidural space, if that works, they know it will be even more effective when the cath is implanted in the intratheal space.

    Medtronics will provide a list of certified docs in your area both in management and implant of these devices. Recover, give it some time and I would certainly give it another try.

    By the way I had a blast in Cancun last year when I went on my second honeymoon with my wife. It never would have happened if not for the pump and then all the work I did once the pain was managed and my head was straight. Getting back to work and just having something to talk about other than what you saw on TV is a nice escape from the depressing grind of a sedentary CP life where you have nothing else to do but think about how bad you feel.

    Good Luck, Dave

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