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Does anyone have a Pain Pump & a SCS implant??

patwhite101ppatwhite101 Posts: 1,213
edited 06/11/2012 - 8:33 AM in Chronic Pain
Does anyone on here have a Pain Pump and a SCS implant?
Looks like I am going to have both. My pain Doc said a pain pump is the only thing that is going to help my chronic pain. I have been on STRONG meds with very little help from them.
I am sick of pain and do not want more surgery but my Pain Doc says that is the only option I have left. Sheesh....
If you have a pain pump....how much has it helped you??
All my pain is in my feet and legs below the knees.
Patsy W


  • Did your doctor specify as to why you will need both? I heard of patients having an SCS and pain pump, but I don't think it's common. Do you have back pain along with your leg pain? I was told a stim wouldn't help me because my back pain is a bit more than my leg pain, and I would have much better coverage with a pump. BTW, I was going to have surgery to put in a pump, and you can read all about it in my post "Shocker". Right now I'm on standby for now.
  • >:D< Oh my gosh, I was so hopeful that the stimulator would do the trick for you. Bless your heart, I know you are just OVER being in pain. I'm sure someone will respond to your query. I just wanted to give you some support and let you know I'm thinking of you and praying that you receive some relief.

    Meydey just got her pain pump this week -- I think Thursday. I'll be interested to see how she's doing. If you do get the pain pump, just think of yourself as a Cadillac, tricked all with all the bells and whistles (LOL) -- very high end!

    Take care and sending you comforting and healing thoughts.

  • sorry youve had poor coverage with stimulator. maybe they can adjust it for better coverage. just want to make you aware of a few things on PP. here's a SH post on tooth decay www.spine-health.com/forum/new-member-introductions/new-site-0

    also my dr. said to watch out for endocrine side effects on PP.
    take care patsy...we're all with you...
  • i just had a SCS implanted for both back and leg/foot pain. My PM placed the leads at T10 i believe. I got excellent coverage during the trial and am hoping for the same on the perm. They implanted me Wed but cant turn the IPG on until Mon due to excessive swelling at the moment. The computer would not communicate with the IPG after final implantation.But during the trial i had sensation from the middle of my lower back to my toes in both legs. More then we hoped for.........
  • For those of you who do not know...I have an SCS implant. And yes I do have low back pain and using the stimulator on my back pain makes it worse. I still have a lot of foot pain too and to deal with this pain my Pain Doc thinks a pain pump would be the best instead of taking high doses of pain meds.
    I do not want more surgery but was told the pain pump was the only option I have left. Sheesh!!
    I just hate the thought of more surgery!!
    My Pain Doc wants me to go to the Cleveland Clinic for the implant. I gonna shake, rattle and roll when I walk. HUH????
    Hugssssssssss >:D<
    Patsy W
  • Has anyone ever heard of kadian or used it if so please let me know what to expect, I was given it today to start next week, was on the opana but the cost was why we changed it. I am going Monday to find out when they will do the next fusion on my back in the L3 4 5 areas . Had L5 and S1 done feb of last year no pain for three whole months, and now this. oh well i am sure it could be worse. Thanks for listening and let me know soon. Tweetybird
  • Patsy, if I were in your position, there's no way in the world that I would consent to a pain pump evaluation at this point in time.

    If I recall correctly, your SCS has only been in place for 5 weeks (June 4, right?)and that's nowhere near long enough for the leads to scar in and for the SCS to reach its peak performance. It's also not nearly enough time for you to have exhausted attempts to program the implant and to really take advantage of the versatility and the range of programming options.

    It doesn't seem like your doctor is really giving the SCS a fair chance if he's pushing you toward a pain pump this soon after the SCS implant. At 5 weeks post-implant, there's so much more you can do to get the optimal coverage patterns, which includes not only physical areas of coverage, but also the comfort level of the sensations. And that's not even including giving your body time to heal and recover from the implant surgery.

    Personally, I wouldn't consider the pain pump until 6 months to a year after the SCS implant, and then only if I had truly exhausted my programming options (multiple sessions, with multiple reps) and I had felt sure there were no other mix of medication/therapy options available that would strike a balance I could live with.
  • I hope you're doing okay!!! I'm sorry to hear that the scs isn't all you hoped it would be. I hope that the docs can find another option without you having to go for another surgery. Big hugs to you!!!
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • i think bionicwoman is right on target with her comments. i've heard some posts on how another scs rep was brought in and it really helped in zeroing in on the proper program. youve said it yourself....dont give up.
  • I too agree with Bionicwoman and think that your doc is pushing too much too soon. Of course I'm not a doc, but I know how it feels to get better programming with the SCS. It makes a world of difference. The problem is, that too many reps don't want to take the time to really give it their best shot with reprogramming. They want to be in and out in record time and send you on your way.

    It seems to me that if your doc is eager to push you off to the Cleveland Clinic, then he is tired of trying to deal with your complex pain issues. To me that's a red flag and sends a bad signal.

    The hardest thing for any chronic pain sufferer, is patience. We hurt so much for so long, that we almost become willing to settle for any recommended treatment without running it through the sanity checker first.

  • No...I am in no hurry for this implant. I do not even want it.
    I do want relief from my pain. But it is much to soon for more surgery.
    The rept "twicked" my stimulator yesterday. I can't even use the new settings. My pain Doc admitted he should never have implanted this stimulator(no, I am NOT thinking suing!!) he said I should have had the pain pump to start with.
    IF I have this pain pump implant it will not be until Sept.
    Hugssssssss >:D<
    Patsy W
  • I would definitely take to heart these posts from Bionicwoman and Haglandc.

    I personally find both of these ladies to be very informed, wise and cautious.

    You had mentioned having great relief not too long ago, so I'm hoping with more time and programming... relief will come your way again.

    Are you having to take more oral pain meds now... than prior to the implant?

  • My pain in my feet and legs is MUCH worse since he fiddled with my stimulator. I also now have a stabbing pain whare the battery pack is.
    He must have irritated the nerves yesterday or something.
    I can't use the stimulator at all now....it really fires my legs and feet up. I HAVE to give it a few days rest. Now I wish he had never fooled with it.
    I am only on 15mg Oxycodone which is nothing compared to the pain I am now in.
  • Has anyone else experienced what Patsy is going through, during the healing time of your SCS implants?

    It bothers me that your doctor said he never should have implanted your stimulator. :O You had a great trial, you took it easy at your sister's house after the surgery and you have reported many good days on here.

    Do you think your doctor may have jumped the gun by telling you this so soon?

    How often do you go for programming adjustments?

    Yesterday... after the representative made the programming adjustments... were you feeling any relief at that time? How long of time do the program adjusters spend with you?

    Do they, by chance, have any representatives on-call during the weekends that you could call and speak with? It would be even better if you could see one of them.

    There surely has to be a way to get this SCS to work for you, instead of against you. Don't give up hope... you've had too many good days.

  • Am in to much pain to really say much right now. Things are really bad for me.
  • I agree with what seems to be a very growing number of people. You need to get back to the rep and get back to where you were and hopefully better.

    It sounds like your adjustments did more harm in their settings than good. You had seemed to be doing so well. Hold on to the hope that it just needs another adjustment.

    I'd suggest since you were doing so well that maybe another rep can get it better if this one can't.


  • I think I would be seeking a second, third, fourth, or 99th opinion - and a new pain doctor. I can't imagine any doctor going from 15mg of oxycodone to an implanted pain pump. In my opinion, that's the equivalent of killing a fly with a flamethrower. :O

    Even if you've tried more powerful drugs in the past and they weren't successful, you really need to go back and try some of them again. For example, I was on Fentanyl patches before my SCS and they didn't work. I tolerated them fine, but they didn't bring my pain levels down enough to let me function, even with 8mg of Dilauded every 4 hours for the BT pain.

    Immediately after my implant, I was in heaven, because the implant alone controlled my pain and I was tapering my meds to nearly nothing. That was when I was still taking things really easy. When I got to the point where I started PT and getting generally more active, my pain levels started to increase from the activity, and I started having spikes that broke through the stimulator, and through my breakthrough meds. I talked to my doctor and we tinkered with my BT meds. That was effective, until I recovered a bit more, and got even more active - then we tinkered again. Within about 4-5 months of having my stimulator implanted, I found the "balance" that works for me and I've been able to maintain that with very little tinkering.

    Prior to my implant, most long-acting drugs only brought my pain down 1 or 2 levels on the pain scale and that wasn't good enough. Those same medications in combination with the stimulator leave me completely pain free for large portions of my day, even though I'm taking significantly lower doses of the same drugs that "failed" before. I still have my moments of 7=9 pain levels, usually when I have an attack of stupid, but I'd say my current balance keeps me below a pain level of 3 about 85-90% of the time.

    It's all about finding the balance and sometimes feels like you're starting over and trying the same things that may have "failed" in the past - but you are, because you're starting from a different baseline with the stimulator. It's like remodeling a house - before you removed a giant wall in the living room, a certain paint color may have looked totally awful, but in an open space minus that wall, it looks just right.

    Things you've tried in the past might be exactly what you need, when they're used in conjunction with the stimulator.. and a bit of exercise.. and maybe some better nutrition. And maybe you even have to throw in an OTC anti-inflammatory or muscle relaxer every now and then, y'know, kinda like a normal person deals with pain. ;)

    But again, there's no way I'd consent to jumping into a pain pump until I'd exhausted every possible chance at achieving that balance with out it - just like I didn't jump into the SCS until I felt like I had exhausted the medications and less invasive procedures available. I'd also dump any doctor that seems to lack the willingness, ambition, or knowledge to help me make a concerted effort to take the steps to achieve that balance.

    On the topic of going for programming and not being able to use the programs when you get home - is your rep programming you in the same physical positions you typically find yourself in? Is s/he working out your programs used primarily when sitting, standing, laying down, etc. while you're actually sitting, standing, and laying down in the office? That can make a huge difference if you're finding the programs are ok while you're in the office, but suck when you get home.
  • Hi,
    I am sorry you are having trouble with the SCS. I am having trouble too! I am almost 3 weeks out from my occipital SCS surgery. As you may recall, I have 2 SCS's. I had programming about a week ago. I had both SCS's worked on. My first SCS was working very well until the re-programming. I should have never had it messed with. I have had a couple of years of great coverage for my arm pain and now I am getting some unwanted stimulation in my left leg. My new SCS is for head pain. I have the remote set on "full blast" (can't go any higher) and I am not feeling much stimulation. I have to recharge every other day. This being said, I am not worried! I am going to get more programming. I know I will get fixed. I have to think good thoughts or I will go crazy. I have come way to far to give up now. Yes,I am having problems with both of my SCS's and yes, I am in pain. However, I would never even consider a pain pump at this time! I am still healing just like you. The full recovery takes months. Give it time. I think you should try more programming. Try a different rep., or many reps. In the meantime,
    ask for better pain control through medication. You are on a fairly low dose of meds. You have many options when it comes to medication. Your PM should be working with you to find the right combination. Why does your PM have you on such a low dose of meds. when you are in extreme pain? I have a hard time understanding why your PM is pushing for the pump. That seems extreme. You just had the SCS surgery! Can you go to a PM doctor? It could not hurt.
    I understand how you feel. You are not alone.

    Take care my friend,

  • Thank you for your impute.
    I am doing a bit better today. The hellish pain has eased a bit and I can now walk a little.
    How I wish the rep had not jacked around with my stimulator. He really irritated the nerves. The pain has been awful and my legs so weak that I have had to use my wheel chair to get around.I will never let hem touch me again!! It has been hell!! I told hem no matter what he did nothing was going to help my foot pain. I feel the pain no matter how high the stimulator is turned. Sheesh!! They know the stimulator is not going to stop all the pain!!
    My Doctors do not want to treat my pain and that is the real problem. They do not want to prescribe pain meds.
    Best to all.......
  • It sounds like you've given up on the stimulator, too. That's terribly unfortunate.. :(
  • Are you saying that they won't give you ANY breakthrough meds? I feel so bad for you. Have you tried taking an NSAID, using ice, or heat? I would call the doctor and let him know the type of pain you're in- you shouldn't be suffering like this. Take care sweetie >:D<
  • I am so sorry that you are in so much pain. I do not understand why the doctor won't give you pain meds. If he is unwilling to give you pain medication then how can he justify giving you a pain pump? It seems crazy. Am I missing something? You deserve better treatment. Your SCS was working so well just a couple of weeks ago. Maybe you just need more time to heal from the surgery. I hope you don't give up on the SCS too soon. You have been through so much. I am praying for you.

  • I am not yet giving up. Just giving my poor spine a rest.
    The rep tinkering with the stimulator for so long irritated the nerves. I have really suffered.
    I have been in so much pain and my legs are so weak now I have to use a wheel chair!!
    I can't sit here long enough to go into much detail.
    Hugssssssss to all
  • What I don't understand is why the rep wouldn't leave you a baseline program that you could switch back to in case the new programming didn't work well. Every reprogramming session I have had, my rep leaves my baseline alone and does not change it until I have been running the new programming several days successfully. Once I am certain the new programming is good, then and only then do we go back and change out the baseline from before. Then we print out all the IPG programming and it goes into my medical records.

    I have the ability to do my own reprogramming, and I never touch my baseline, no matter how well I think the new programming is that day. I have run new programs for up to a week and then gone back to baseline to double check the effectiveness of the new programming on days of breakthrough pain.

    How much control have you been given over your SCS? Can you adjust the strength of it? What all can you adjust?

    Like the others have said, the SCS is not the "be all end all", it is merely a part of the whole pain management picture. For me, if it weren't for a blend of medications for inflammation, muscle spasticity and nerve pain, my SCS wouldn't be able to do as well as it does. It takes the combination of the meds, the SCS, proper diet and exercise and when necessary rest, to control my pain and discomfort. It also takes the right attitude.

    I agree with BionicWoman, that the jump from 15mg of Oxycontin to a pain pump is ludicrous. I would like to think that there is some sort of checks and balance system at the pain clinic you go to.

    Anyway, I hope you start feeling better soon. Talk to someone about your situation. Do you have someone who you can use as a sounding board or someone to just listen to you? Is there someone who might be able to help you reason through all that is happening in your life?

    Don't give up and certainly don't give in.

  • Before my implant I was on 40mg ER Oxycontin plus 10mg persoset for BT pain. After the implant the Dr. dropped it doen to 15 mg. Oxycodone. That was not enough to last 6 hours. I ask hem to adjust the Oxycodone for better pain relief.
    It's because of the meds I was on before that made hem say I needed a pain pump instead of the stimulator. He knew what I was on before the implant! I think he is just covering his a#%!! He said the stimulator would not help the kind of pain I have. Sheesh!! It was helping my leg pain but not all my foot pain. They know it will not help all the pain!! My foot pain is savage!!
    All of this crap started coz I ask to have my meds adjusted!! Only then does he look to see what meds I had been on over the years. And he flipped out. He said someone who had been on the kinds of meds I had been on needed the pain pump. But he knew what I had been on!!
  • I still think you might do well with getting another opinion. Even 40mg of Oxy ER with percocet for BT pain, is no where near enough to start considering a pain pump. Of course that just my opinion. Many people are on triple and quadruple that amount and aren't ever considered for a pump. There has to be some other factors involved here that we aren't seeing.

    I know it has been mentioned multiple times already, but the SCS is not going to take away 100% of a person's pain. A good pain management doc will use a multitude of "tools" to help a person out, not just rely on the SCS.

  • I cant but think how ironic this situation is.
    My SCS worked like a dream for the ten days it was installed in me, prior to the infection and now I see youre having so much trouble , Pat.
    Im sorry and hope you get some resolution to this.
    I agree with some of the others that 15mg of oxy is nothing or next to it.

  • Is it possible for you to sit down with your counselor and your sister, in an attempt to piece this together and get a second opinion? When my pain spikes, it becomes very difficult to concentrate and think clearly. I'm sure your sister is aware of your continual suffering and would gladly step in to help you right now.

    The situation you are in is very unfortunate and could possibly be remedied with some additional outside help.

    Has your doctor given you any kind of explanation to why he won't adjust your oral pain medication right now?

  • I see nt pc Doctor today...the same Doctor that refused to treat my pain any longer and he sent a note to my pain Doc stating he would not treat my pain. My Pain Doc sent a note back telling hem what to give me for pain. I did not see my reg Dog...he was out out town so another Doctor wrote my script for 15 mg Oxycodone. It does not last 6 hours so I ask my Pain Doc to work with me until we got my meds adjusted to cover my foot pain for 6 hours. He had to call my pc Doctor to let hem know he was going to take over my pain management. After speaking to my pc Doctor for some time he came back and was babbling about a pain pump!! He said he told my pc Doctor what he was going to do about the pain pump but never ask me if i even wanted one.
    I ask what he was goinbg to do about the pain I was having now and he said to see my pc Doctor this week. The same one who refused to treat my pain any longer.
    All I wanted and needed was stronger meds to last the 6 hours before I could take another pill.
    That was and still is all I want!!
    This babbling about a pain pump is stupid. Adjust my meds and I will be fine along with the stimulator. I am NOT having more surgery!!
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