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Breakthrough pain with Medtronic Intrathecal Pain Pump
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horton71 posted:
Hello,
I had a Medtronic pain pump implanted mid last year. Also have the hand held device to get a "shot" for BT pain. Since the device was implanted my quality of live has gone down radically. I've gained over 20#, can't do what I used to do when on oral meds, BT pain is not controlled as well, and some other things I'm sure I'm not remembering...lol. Anyhow, I have told the doc about the problems with BT pain and the increase and lack of control. He simply smiles and turns away. I can not engage him in conversation about my issues. I really feel that he feels I am an abuser, but how the heck can I abuse an implanted pain pump? I simply want to at least feel how I did pre-implant. I don't feel that is asking to much. My family doc has advised me to have the pump removed, but I don't want to have to start going to pharmacies again and get into that mess. I'd rather get the pump "tuned" properly and get on with my life.
Find another PM doc is difficult at best. None I have contacted are willing to take on a pt with an existing pump. (I had few problems with "doctor shopping" while on oral meds...lol) I don't know what to do. Is there anyone out there who might have some ideas or advice? I sure would appreciate it. TIA
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mendy44 responded:
Hi, Horton71, So sorry to hear your story. Anyone that hands in their narcotics, (The control of their life line for a better way of life) is not a narcotics annonymous candidate. or said your way "A abuser." I tried this with my primary dr. because he was definately opionanated about my choices.I told him that he made me feel like i was a waste of his time. I said I am being proactive and he doesnt have to understand my personal choices any more that he would a smoker. But YES, i do care about my health. Ok?? It is possible your tolerance for narcotics has exceeded the magical hand held miracle wand. Or maybe he started you to high. dont give up. I'm having the opposite problem. Before my pump I was on so much medication everyone that didn/t know me assumed I was a CLOSET DRINKER!!! ( I sluurrreed.) and now with my medtronic pump and so long as I have a cane or my hubbys arm I walk and talk and people dont go inside when they see me coming!! I agree that most pain drs do not belive what were saying, because whether you are happy with your Dr or not, if he put your pump in you, you basically have a new spouse. No other pain dr will touch you. It took me 2 yrs with my hand held gadget and at that point he told me he needs to fine tune me and put my relief button away somewhere safe. It took 4-5 mos to get my meds right, and now 4 yrs later, he's tuning me up agin. At some point as pain ful as it may be you may want to have the Dr turn your medication levels down to a very pain ful and uncomfortale level for a month or more. That is how I made it this long . I do it once a year now. My Dr. did not recommend it but he honored my nutty wishes, and hey it works for me. Take care. Do everything you can to hang on to that
 
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horton71 replied to mendy44's response:
Thanks for replying, Mendy..... Sounds like you have had quite an experience with your doc too. I don't want to come across as cold, but I really wish the docs who treat me could experience what I do in terms of pain. Then maybe they would understand what I'm saying and not just judge me. I can't tell you how frustrating that is. It's the old "walk a mile in my shoes".
I have the same feeling.... the doc doesn't want to waste his time fiddling with the pump. He programed it to what he feels is correct, and no person less educated than him will tell him different. He is very disarmingly charming yet extremely condescending at the same time. A real combo for someone in his line of work.
I have just about decided to have the pump removed. It comes down to being held "hostage" by one person (the doc) or numerous (pharmacists). I now realize I had more control over my pain when I did not have the pump. I could have much better control with a more open minded physician, but don't see that happening. This guy was quick to cut and install and now lax in dealing with the aftermath so to speak. Not a good combination.
 
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cweinbl responded:
The intrathecal infusion pump, like the spinal cord stimulator are last resort options for chronic severe pain that is not managed with oral, IM or transdermal medications. One must be certain that they are not obtaining relief with medications, or that the side effects are intolerable, before allowing someone to surgically implant a machine with a long term success rate of little better than 60% (12-month success: http://www.painphysicianjournal.com/2009/july/2009;12;699-802.pdf ).


One might also wonder how many pain management physicians push the implanted machines because it will lower their opioid prescriptions, making them less of a target for the DEA.


The most common reason for failure with the IT pump is a catheter incorrectly placed, crimped or blocked catheters and catheters that are correctly implanted but which move later to the wrong location.


Some people also experience a placebo effect with the trial pump. They believe it's working well because that's what they want to occur. How many times have you tried a new drug and it seemed to work very well, but after a few days or weeks, the pain comes back raging? The same applies here. After the implanted pump has been installed, the pain comes back with a vengeance. Never underestimate the power of placebo. We so desperately want something to work that we convince ourselves that we have less pain. Weeks and months later, we realize that our mind tricked us into believing in the pump's efficacy. The same placebo effect works with the spinal cord stimulator.


In general, if your oral, IM or transdermal pain medication is helping, don't be in a hurry to dump it. In many cases, the patient can tolerate much higher dosages. Remember, opioids are natural substances, binding with opiate receptors in the brain. Pain patients can tolerate very high dosages of opioids as long as they are increased gradually and respiratory depression is not a factor.


Off-label drugs should be used, even if they only help slightly. This is especially true with neuropathic pain and anti-convulsants. All chronic pain patients should consider using an anti-depressant with the other medications. Anything that will inhibit the reuptake of serotonin makes perfect sense. The low dosages for pain (compared to higher psychiatric dosages) are easier to tolerate. Cymbalta, a fairly new anti-depressant appears to also have significant pain-fighting qualities. Some of the older tricyclic anti-depressants help chronic pain patients sleep better. Use them.


Finally, almost no chronic pain patient will experience a pain free life under any circumstances. The best that we can anticipate is to be able to better manage our chronic pain. Our goal is not to go from a pain level of 9-10 (on the 0-10 scale) to a level of 0, 1 or 2. It won't happen. And if you dump your opioids for the SCS or IT Pump because you think that you can eliminate most or all of your pain, you will be sadly disappointed.


Conversely, anything that can reduce our pain from 9-10 to a level of 4-5 is a wonderful result. For the vast majority of us, obtaining a constant level of pain under 4 under today's pharmacology and delivery capability, is simply unrealistic.


If your pain level goes from 9 to 4 or 5 with oral, IM or transdermal medications, and you can tolerate the side effects, then consider yourself fortunate. I've read about many patients who were at a level of 4 or 5 with medications, but who dumped the drugs in favor of the SCS or the IT pump and had a horrible result. Sadly, many of those patients were later unable to convince a physician to resume the drugs that got them to a 4 or 5 in the first place. It's all about management and tolerance, not elimination of pain. We need to learn how to manage our pain, not eliminate it. Be careful about dropping drugs that help in favor of machines with a questionable track record. They are only for patients who have horrid side effects or who obtain no relief from medications.
cweinbl
csw2@bex.net
 
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tuloud54 responded:
Morning Horton, Sorry you are so frustrated with your dr. What many of us have learned in pain mgmt.,myself since 2007,is you will never understand how hard it is to get adequate pain coverage. I had a pump put in in nov 2012.Stil getting adjustments but love the fact I don't have to beg my dr for help.I moved to Az in nov 2013 and had no problem finding a new,caring and understanding dr.He believes my pain is very real.Maybe I lucked out but the pump has saved me the worry of a patch not lasting 72hrs,a pill not working for 8hrs and the general anxiety of worrying I will have enough till the end of the month to avoid withdrawal.Maybe take this post to your doctor. After my pump,it has taken time but please make your dr aware you just need more pain help than you are getting. Patience is a virtue but pain will test that clich? real quick.My decision for the pump was based on how hard it was to get relief with meds I was on.Pain doctor was an idiot and did not care. My new dr does. Try and search for a second opinion.I found my dr on google from fl and feel blessed.I hope you get better pain coverage. How long have you been on pain meds.To get a 4 on the pain scale,consistantly,I needed the pump. My pain is managed and only getting better.Wish and hoping yours will work as well as mine has.God speed.Sorry for anyone in pain trying to get any dr to believe you!Tom
 
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77grace replied to cweinbl's response:
Hi cweinbl ,
Thanks for all the input you posted !
It helped to remind me that even though I don't always feel like I get much pain relief ,I probally do ! I'm at that point where my tolerance is really bad!I've been on pain meds for over 15 years 1I did take a break bout 6 years ago but now I need to take a lot to get any relief !But most of the time it brings me down lower than a 9 or 10! Thanks for the reminder !
77grace


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