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Thread: Don't Do This, DON'T DO THIS, please.

  1. #1
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    Don't Do This, DON'T DO THIS, please.

    The past year has been an exercise in last ditch pain management. I'm certain that the medical professionals and manufacturers of Spinal Cord Stimulators and Intrathecal Pain Pumps would have to agree, albeit grudgingly, with their being near the end of preferred treatment. In a way it's not unlike the installation of a port. It's a great solution, and if we knew the future, many more would be installed earlier, avoiding the damage from IVs and PICCs. Spinal cord stimulators and pumps are implanted only after narcotics and surgeries fail to resolve the pain from whatever sources. I'm about to find out exactly what happens to improve the quality of my life and probably take away some of the pain medicine I so desperately trust to help me.

    The efficacy of the devices is variable from individual to individual so they have devised a means to try out or trial each type of device. Again, because of the variables, you have to be evaluated by a Psychologist and even take a test or several. I started looking at these things in 2003. The devices preclude several types of imaging after the implantation. No MRIs and other stuff using electromagnetism, and I need frequent MRCPs. Now there are MRI compatible devices of both types.

    Over a year ago now I began the process of trialing the Spinal Stimulator. I have been a fan of TENS units, external devices that send out an electric buzz that confuses pain signals. At a point the sensation of the TENS units lose their effectiveness. Spinal Cord Stimulators actually have lead wires and a few contacts, resembling the long tentacles on a squid, widening into paddles with the contacts dotted like the suckers would be placed in 2 rows. The best things about the stimulator are the epidural placement of the the wires and paddles, and you can wear it for a week to see what you get improvement in the pain level.

    I trialled the Spinal cord Stimulator and sadly, the improvement easily could be my wanting it to work. I wasn't as prepared for a failure, as I thought. It had taken half a year to get the trial. It's not supposed to be so much hassle but it was.

    I had to find another practice to trial the pain pump. The trial was just looking for problems, non-negative responses were what the trial determined. Anybody who's had a spinal tap can understand the dynamics of the trial, the difference being a long acting narcotic is injected into the spinal cord fluid. In retrospect I believe that the trial wasn't enough to make a decision one way or the other. If this doesn't work, the removal of it is probably something I would have to pay for. I can't stand the thought of it just remaining inert and inside me.

    &&&&&&&&&&&&&&&&&&&&&. FAST FORWARD TO THE SURGERY &&&&&&&&&&&&&&&&&&&&

    A window opened up for the trial and the implant surgery by a month, I am too late for second thoughts, and I have them. The big surprise with the trial was the fact that my legs wouldn't work. It was difficult to distinguish between the numbness and the residual pain of the injection. It was non-negative, meaning what exactly, I am not sure now that I think about it.

    Slam bang I see the surgeon who's doing the implant. I'm not a good person to surprise. First, the pump resembles an overgrown hockey puck and I had been looking at something closer to a Zippo lighter. The implant literature showed the catheter threaded in the epidural space to the desired position, screwed to a vertebrae and sutured to the dura, the membrane that encapsulate the spinal cord and fluid. Not! The catheter is inserted into spinal canal at the base of the spine and noodled up to the desired position. They anchor it to the bone and thread it around front and attach it to the resevior pump, leaving the catheter nozzle to float, or possibly sink in the spinal fluid.

    I've heard that people who have had a port implanted complain most about the skin being stretched over the appliance. Granted the skin is tight over the collar bone compared to the abdomen but I am beyond skinny at 120 pounds and now 5' 9". Hockey puck is faint praise for the pump and resevior unit at 88mm X 20mm (3.5" X .8"). I'm dismayed by the apparent lack of smooth contours, it's blocky and the edges are clean and square, none of which I see as quality, rather a dangerous and awkward chunk protruding from the left side of my abdomen, under the skin. If I bend over, the device wedges between my pelvis and the ribs.

    There was a brief discussion about what would go into the pump, in fact every time I have looked into the advances in the technology, the same list of narcotics are typically used, the advantage being micro dosing directly on the affected nerves. The pump was implanted January 29th. When I went in to the appointment for the first fill there wasn't anything to put in the pump. The doctor had decided to go with a different drug altogether. Not a narcotic but a little known drug called Prialt!!!

    I believe that I said that it is not a good idea to surprise me. I'd put a neurotoxin in my spinal fluid if I could study up on it first. Wait, Prialt IS a NEUROTOXIN! I'm all for advancing Science, but I don't like surprises. I now understand about the drug and the truth is I'm about to take another huge leap of faith. I don't have any yet, and already it's degenerated into a mess. My new pain management practice is claiming that the specialty pharmacy had been trying to reach us for a week, we have been hovering around the phones, primary and secondary and no Pharmacy had called. An appointment to fill the pump the first time at a surgical center is now a house call from a nurse. We're still waiting for a response from the pharmacy.

    AAAAAHHHHH!!!

    LL
    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

  2. #2
    My thoughts are with you Little Lab. I have always found your logical explanations and genetic information an incredible resource. I can only imagine the enormity of this leap of faith! You are a teacher for so many of us even during pain and feelings of indecisiveness. Stay strong. Your questions and research keep those health professionals on their toes! Best wishes!!!!

  3. #3
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    I am so sorry to hear about your travails.
    I hope you find it effective in the end!
    Mother to 3 CFers: boy 24, girl 19, boy 11

  4. #4
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    I feel ya LittleLab. Hang in there and good luck. I enjoy your intelligent posts.

  5. #5
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    Thank you for the encouragement and support and the reminder that I'm doing something that we all can learn from potentially. The pump was implanted January 29th, 2018 as I noted when I began this adventure and I am not feeling better. My bad-luck-o-meter continues to peg. As a person who relies on statistics, it creeps into our lives, and I have a feel for anomalies verses a pattern. Either medical errors across the board are staggeringly high or I'm just unlucky, catching the rare event/reaction with most things I have endured medical, this year.

    Case in point, I didn't get pre-operative instructions for the Stimulator trial, done last year. Not being my first rodeo, I knew I should suspend certain meds and supplements, etc., so I called the doctor's office and they gave me a verbal list for preparation. For the record, nearly every pre-op/procedure appointment I've been to, included a written list of things for preparation. I also signed a copy for me and the doctor/hospital at the time so everyone was covered on the appointed day of whatever procedure.

    They forgot antibiotics (verbally) and I had been on 17 days of a 21 day course when I went in. The primary reason for the long script was to erradicate any remaining infection that seemed resistant. It wouldn't have mattered for the procedure, verified by the prescribing doctor after the fact. The tech putting an IV line was digging around iside the crotch of the thumb when I was asked about the list. I say tech because a phlebotomist would never torture someone as I was. I've been stuck only one other time there and it wasn't painful or particularly special as IV's go. Many less painful spots abound on either arm/hand. When the question about antibiotics came up, I had warned the tech twice that she was hurting me, if not for the distraction, I might have saved the day and lied. In part, an early hour, feeling crappy and the tech that I finally told to stop and find a different place, the procedure ended up being aborted and I was pissed at the tech, the nurse and pretty much everyone knew I was not happy. The next time I saw the doctor, she was upset about my angry reaction to the antibiotics and my claim of not getting any written pre-op instructions. I had been trying to ignore the needle poking around in my hand and wasn't thinking about it then. When we finally got around to the trial weeks later, everything was fine except for the tech digging around iside the crotch of my thumb and forefinger, AGAIN! I suddenly realized that we had no ordinary tech. Malace comes to mind because she was doing it intentionally. This time I told the tech to stop and find another place a lot quicker. I also filed a complaint because it was the same person who was torturing me the last time. The doctor who was doing the procedure got one pair of leads up the epidural space and punctured the dura membrane threading the second set of leads and had to withdraw the offending leads. This is an anomaly and she definitely wasn't trying to hurt me. She called it a "poke" and that is what it was. I could tell she was ready for another angry outburst. I'm not usually a volitile person, in fact I'm usually the one who keeps calm in the face of chaos. I didn't even get a headache, which doesn't take much fluid loss to cause a doozy.

    If I had to give someone advice who is considering any implanted device, it would be to ask a lot of questions and not yield to pressure, from anyone. I yielded to several pressures, real or imagined. The only time I saw the size pump they were going to implant was at the surgeon's office and I was stunned. Either way, to go for a device implant or try another approach, the decision is a little like a pregnancy verses a tubal ligation and it can be that life changing. I'm in a holding pattern at the moment, which means that nothing besides saline is going into my spinal fluid. There's an incredible story to tell so far, but I don't know how this ride is going to end.

    ***********************FAST FORWARD A YEAR********************************************

    On January 29th, my implanted Intrathecal Pump will have been in my body a year. I can't begin to describe my disappointment over this mess. I reacted badly to the Prialt. It was a good first thing to try but the warnings don't do this drug justice. Fortunately I see a psychiatrist several times a year, if for no other reason I take a couple of drugs that a psychiatrist knows better than other doctors usually do. Forewarned that beginning Prialt was on my mind prior to my appointment, my shrink researched and printed a monograph on the drug. It cannot be given by any means other than intrathecal infusion. An injection anywhere except directly into spinal/brain fluid causes an immediate psychotic break, as will any other means like a pill or lozenge. In other words, you will go out of your mind, crazy, bats in the belfry, bonkers or whatever you want to call paranoid psychosis with sensory hallucinations of every sort. After discussing all of this, I thought I was prepared. The monograph insists that a slow, gradual titration over a month or more was the best, and supposedly only way to place a patient on this novel drug.

    A pharmaceutical service came to my house and started me on the initial dose ordered by the doctor. At levels well below clinically appropriate for Prialt to do its job, I was confused, dulled in my thinking and definitely a failure. The doctor ordered the drug removed and a very slow infusion of saline because it takes weeks to empty the catheter running from the pump up my spine.

    Next, I was informed that there wasn't any other drug that they could put into the pump and I was dumped. The remainder of the year was spent with a slowly dying non-rechargeable battery while I searched in vain for a doctor who will take me on and service the pump. WHAT!!! For obvious reasons, this story remains open. I can only say " Don't Do This, DON'T DO THIS PLEASE. The current political environment conjured by well meaning idiots have turned Pain Management into something I don't recognize. Four Pain Management Practices I have been to over since 2014 resemble converted solicitation or call centers where phone banks dominate the junk still strung through walls and such. One office I visited the doctor who had been occupying the office (or somebody really pissed off) attempted to tear his name plate off the door. The name plate was still on the door but not for lack of effort evidenced by the seriously bent and chewed brass plate where somebody used a crow bar and other tools. Either that or a gorilla got loose in the building.

    This just underscores how sorry pain management has descended into. I blame the doctors who flatly refused to help the well meaning bureaucrats. Then again, I am finally old enough and have been fooled far to many times to trust what looks simple and straight forward in politics. I'm not a conspiracy nut but I have been part of a couple conspiracies in my life. What if the war on drugs has just changed uniforms? All 50 States came back from the 2013 national Governor's Conference with marching orders to curb the rise in prescription opioid overdose deaths. I was expecting Draconian rules and ridiculous limits and oversight on prescribing and monitoring narcotics. Instead they came out with a short four page set of suggestions for physicians prescribing pain medications. They had three "Bright Lines" or flags for doctors to note when a patient takes narcotics for longer than three months, more being prescribed than a suggested amount, and combined with potentiating drugs like benzodiazapines, and some sleep aids.

    Now they are Black Marks, not bright lines, the quantity limits are being lowered from the already low amount initially suggested and now the suggestions are becoming rules, with big teeth to intimidate doctors into towing a line they know was fowled by a scant few. Truth be told, combination of opioids with alcohol, muscle relaxers and way too often, drugs used in mental health like anti-anxiety drugs are responsible for the majority of all accidental overdoses. I'm not just expressing opinion, I lost my little sister to an accidental combination of a muscle relaxer, anti-anxiety medication and, alcohol. I don't blame her doctors, in fact I don't blame my sister, although she could probably give me lessons on drug interactions, from experience and she worked in medical records. Medical Doctors are amongst the most educated and mentored professionals.

    This saga is far from over. Now the rates of suicide of chronic pain patients are rising.

    What Next?
    LL
    Last edited by LittleLab4CF; 01-19-2019 at 01:54 AM.
    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

  6. #6
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    Hi my daughter had the spinal stimulator and it didn't work You have to try it externally first If it doesn't help your pain externally don't have them put it in Believe me I now know fromexperience cause shes having surgery to take it out as we speak On the other hand she also has the p0ain pump in her and it has been helping alittle bit mstein

  7. #7
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    Thank you for the input. Right now I'm trying to find a doctor who will find the best drug for my pump, the last one requiring a test of morphine in the pump's port.

    What I am curious about is why your daughter is in so much pain? At times I think I'm alone, at least rare because people don't talk about pain and pain management on this forum. I'm old enough to understand now that in my early cognitive years I was in constant pain. Most children suffering from malnutrition especially vitamin D have bone pain. April of this year I will be 69. An observant doctor and former pediatrician from Brazil diagnosed me with Rickets just last week! When I asked if she could tell me how long I have had Rickets, she said probably as long as as I have been seriously skinny. Another doctor in on the exam grew up in Jamaica and though he had nothing compared to CF, his mother didn't drink milk and he had Rickets until his school physical and nutrition reversed the condition. And it was painful!

    This is important to me and I believe most CFers and those who treat us. I came a little closer to understanding what it is like to have CF, impossibly compared to someone who is normal. Crippling pain is not to be understood if that's all you know. CFers are commonly the skinniest kid in school. Food was ample and as well as we knew, good and nutritious and I ate my fill. Every CFer who can, eats the same way. Just the pain from osteopenia osteoarthritis and then vitamin deficiency so common in the late diagnosed.

    It's apparent that CF involves a lot pain if by your daughter's need for invasive pain management implants. Your contribution underscores the extremes CFers go to. A lot of silence has a lot to do with opioids and children. As a former child with a vivid memory, I say we need to have a discussion about the topic.

    Thanks for sharing your thoughts,

    LL
    67yr. old man, DX CF 2002 by sweat test. Heterozygous S1235R revealed by genetic testing in 2003 & 2012 accepted secondary mutation. 7T, 7T polymorphism established to be virulent. Classification review in 2017 remains CF diagnosis.

    Complete pancreatic atrophy, Bronchiectasis, MRSA, osteoporosis, small duct disease, charming personality.

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