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SCS and Pain Pump

ldmobleylldmobley Posts: 36
edited 06/11/2012 - 7:38 AM in Pain Management
Hello all,

I am curious, does anyone have a SCS and Pain Pump?(Sorry if this is a silly question) I have an implanted SCS and it does great for my legs and feet. The pain in those areas are completely covered. However, I continue to have back pain. It has actually gotten a bit worse since my implant surgery in September. I have since started having to take pain meds again (not near as much as I did before the SCS because I had leg and foot pain to go along with it). I have started waking up to back pain at night. I have to take pain meds here and there throughout the day to get me through. I know it is still early in the game, but I was just curious. I feel that half of my problem has been fixed, but what about the other half that is just as painful and annoying? I do not want to give up the SCS because it is doing such a good job with my legs and feet. What do I do now? Any comments or suggestions would be greatly appreciated.

Thanks,
LMobley
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Comments

  • I have an SCS and may be getting a pain pump also.
    Only my problem is, the SCS does not help my pain any. When my PM referred me to another PM for the pain pump implant he said a lot of people had both.
    I also have back pain but the SCS has made it worse.
    I will be having my SCS removed before I have the pain pump implant. No need for me to be burdened with both implants.
    Can you not get the stimulation in your back? Mine is low back pain and had the stimulation right where I needed it but it only made it worse. My rep said that sometimes happens.
    Best of luck
    Patsy W :H
  • I have an appointment on Wednesday to try again, but no I have not had ANY stimulation in my back. During my trial I had great relief. However, the permanent implant isn't quite as good. Like I said, it covers all of my feet, legs, and hip pain but anything higher than that, it doesn't touch. Don't get me wrong, I can turn it way up to the point that I can feel the stimulation in my finger tips, but it isn't covering the PAIN in my back. Does that make sense? :) My doctor told me that this could happen before I had surgery but before surgery, my feet and legs were my biggest problem. I guess now that my feet and legs are covered, I feel my back MUCH MORE. :) I have faith that one day I will be able to function normally. I am only 34, I still have a lot of life left to live. :)

    I hope you are able to find relief with the pain pump. Please keep me posted. I have read many of your posts and find that you and I have many things in common. Good luck in your efforts! And, thanks for your reply.

    Have a great day!
    Lila
  • i have turn down both the scs and pain pump.now my nuero wants to do a 4 level on my back.if my surgery doesn;t work out i think i will reconsider the pain pump.
  • I see my new PM Wenesday too. I will let you know what he says.
    Do you know that I had a good trial too but my permanent implant has failed to help my pain. I do not know why...but a few others had had the same problem.
    My PM failed to tell me that he did not want me on narcotics during my trial and that altered my trial. But I really do not know, but thats all I have to go by. He said that was the only way you could tell just how much the stimulator was helping your pain. But I am still puzzled as to why I could have a good trial but nothing from my permanent implant.
    Perhaps this new PM will know and can give me more information.
    Motelman...people with pain pumps love them and swear by them. They say it was the best thing they could have done for their pain.
    Best of luck to you both. Will let you know what my new PM has to say.
    Cheers
    Patsy W :H
  • My doctor called and bumped my appointment up to today at 3pm. I will let you know what he says.

    Like you Patsy, I had outstanding coverage during my trial. However, I was told to continue my pain meds as needed. He just wanted me to journal how many meds I was taking to see if there was a decrease in meds. There was actually one day during my trial that I did not take one single med. That is what sold me on the SCS. Now that I have the permanent implant, I only have coverage from my hips down to my feet. I can turn it way up and feel the tingling all over my body but I can still feel the back pain through it. I have faith that we will figure something out.

    I really hope that you find the releif you deserve. You have gone too long without relief, it is time to find it. I pray that this new doctor has the miracle you are looking for. Keep me posted.

    Motelman, I hope things work out for you as well. I know how you feel. I didn't really want any of these things either but after having surgery and having more and more pain, I needed to try something new. I have read alot of material and ALOT on here as well. Then I thought I should at least try it. Therefore, I did the SCS trial which was FABULOUS. And now here I am. I do not have the leg and foot pain that I once had AT ALL!! I think now that pain is gone, my back pain is more and more visable where before hand it was mainly my legs and feet. I have high hopes that my doctor will figure it all out. I just have to allow him to. He wants me to be comfortable as do I. We just may have to try several different things before we find the key.

    Have a great day!!
    Lila
  • For some odd reason a few people don't get the same results from their trial after having the stim or pain pump surgically implanted. I've done the stim trial long ago and it did nothing for my pain. The problem with me is that I have both mechanical and nerve pain. However I did a whole lot better with a pain pump trial and I did go on to have surgery to put one in. It's still very early and it will take a few months to get the dose right. Anyway, I have heard of people having both stim and pain pump running simultaneously I guess because of where their pain is or there are different types of pains going on. Please keep us posted about today's appt.Take care
  • Well I went to my appointment and sat for a little over an hour trying different settings on my stimulator. We did not have any luck. It seemed like all the programs she tried to get into my back went straight to my ribs and with just a little bit of stimulation it started hurting. She said that it seems like my nerves on my ribs are very shallow and are pulling everything that is meant for my back into my ribs. :( She did leave one program that gives me a slight tingle in my back (still pretty intense in my ribs though) that she wants me to play with to see if I can get used to it. I turned it on when I got home and am currently trying to see if I can get used to it, but just in the short amount of time I have had it on, it is kind of hurting my back more than it is helping. I am afraid that if I turn it up any more it is going to hurt worse. She is going to send another rep to come and try to reprogram me in a couple of weeks. SO, guess I am still in the same boat I started out in.

    I did mention to the doctor that I am still having to take meds for my back and it wakes me up hurting in the middle of the night and he said that he hopes to start cutting my meds down a little at a time. (WHAT!!!???) I just said I am still having considerable pain in my back and I am having to take meds!!! (not NEAR the amount I was taking) He also said that the majority of my pain was in my legs and feet therefore that is what they were trying to cover with the stimulator. I had to remind him that I have always had back pain!!! I don't know, this appointment was very strange to me. Guess I will wait it out and see if this other rep can give me any relief. I will let you know afterwards.

    Thanks for all your comments and concerns. It is very nice to have people that understand to talk to.

    Have a blessed day all!! I pray each of you find a moment of relief in this day.
    Lila
  • Thank you for the update.
    Oh dear....I had hoped the rep could have did more to help you. But I do believe we are all wired a little differently and perhaps it's because of where the leads are placed. Mine are at L4 &L5 in my lumbar spine and I got great coverage in my lower left back just where I needed it. But all it did was make my back pain worse. Stimulation where you do not need it is painful. Let us hope the new rep can help you.
    Cutting your pain meds that you are now taking for your back pain makes no sense does it? I do hope they will not do that to you.
    My pain meds have been cut way back and I am in agony with my feet and legs all the time. I really need the help of my stimulator but all it does is pulse/timgle on TOP of my pain. That is NOT a good feeling at all. After a short time it drives me bonkers so I do understand what you are saying about your back pain.
    I see my new Doctor this morning about a pain pump implant and will let you know the outcome.
    I have been awake since 3:30 with this pain so i am going to be glassy eyed and crabby today.LOL And I have to leave in a couple of hours!!Sheesh...
    Best of luck to you Lila and let us know how it goes with the new rep.
    Patsy W :H
  • I'm curious on your statement here:
    patwhite101 said:
    Thank you for the update.
    But I do believe we are all wired a little differently and perhaps it's because of where the leads are placed. Mine are at L4 &L5 in my lumbar spine and I got great coverage in my lower left back just where I needed it.
    You are the first person that I have heard of who had their leads placed so low. For lumbar coverage, it's my understanding that leads usually go in the lower thoracic spine. I believe Cherish22 had her leads placed in the upper part of her lumbar and my leads will probably be placed at T11-L1. Is it possible the reason why your SCS is not working for you is because the leads are not in the best spot? Where were your trial leads placed?

    Dave
  • Patsy I have said a prayer for you this morning. Things are going to work out beautifully. I have faith!! :)

    You know I think I may be having the same problem as you. I turned that new setting on last night and it began to really make my back hurt. I then went back to the old setting and now it doesn't seem to be working the way it did before. Is it possible for the new setting to have aggravated my back pain and mess with my nerves enough to change the way I feel the old stimulation? I still have the same program that I used before my doctors appointment. I have had it on all night and it seems to not be working as well as it did before I got programmed. I almost feel that I should have just left well enough alone. :( I just want some relief from my back!!!! Oh, by the way, I did ask my doctor what level they put my leads and he said that they are at the T-7 level. So, my leads are high enough to get back coverage right? I am praying that the new rep is my miracle fix. :)

    Sorry, I sound crabby. I had a rough night.

    I hope each of you have a blessed day!!

    Good luck at your appointment Patsy, I am thinking about you!!

    Lila
  • i have alot of back pain,and that is one of many reasons i would never want a scs .but it does help alot of people here.hope it works for you.
  • Some folks report that their SCS causes irritation to nerves. I have not had that issue with my SCS, however I can say that when I am tired, stressed, ill or battling my monthly cycle, it causes my perception of the stimulation to change. It is very similar to how our pain perception changes with the same stressors.

    One thing that I learned from my rep, is that the tendency (most especially with lumbar SCS's) is to drive the signal very focused and as deep as possible. So as kind of a default practice, reps tend to set the SCS up to fire in this manner. For me it caused intense pain, spasms, chest wall stimulation and also spasms in my throat. So the rep reprogrammed my SCS to deliver a more diffused pattern and not so deep and it really makes a huge difference.

    So don't give up on reprogramming. I think it's great that your rep is willing to hook you up with someone else to give it a shot. That speaks well of your rep.

    In the interim, are you able to adjust your pulse width or pulse repetition?

    "C"
  • Good morning,

    Yes, I am able to adjust my width and pulse. I use those features to help me out on the days that my leg and foot pain are able to breakthrough the stimulation. However, we still have not been able to work out my back issues. It is still early in the game so I am not giving up anytime soon. I know there is a way because my trial was able to do. I had a wonderful trial, it covered ALL of my pain.

    Like you, I have chest wall stimulation (mainly in my ribs) that hurts after a little bit. The programs that are supposed to be for my back are being taken by my ribs. I had to turn it off. I can not handle it. It will work out though, just need to be patient a bit longer. :)

    Have a blessed day!!
    Lila
  • Hey guys!!

    Went in and got reprogrammed by my reps supervisor yesterday and I think I might be on the right path now. :) He worked on my programming for a little over an hour and finally asked my doctor to get me an X-ray. Afterwards he could see that one of my leads has moved a little bit and that was the one causing all of my rib pain. AND he also found that I am plugged in backwards!! Right is left and left is right!! That made alot more sense and he was finally able to figure it out. I am finally feeling some stimulation in my back. More on the left than right but I do feel it on the right especially when I have it turned WAY up. :) I like it set on about 9.50.

    The good news is that I didn't wake up in the middle of the night needing meds. :) I did have to take 1/2 of one about mid morning just to take the edge off. We will see. I am hoping to totally eliminate pain meds. (I know this is a far fetched wish) :)

    Hope you all have a GREAT day!!
    Lila
  • <:P I hope this works and I'm so glad they saw what was going on. Please keep us posted on how this new setting is working for you. Take care
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