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    #16
    Originally posted by sandim
    I talked to a rep at one time about scs. I don't want one at this point, and since I can't tolerate a TENS unit for more than 4-5 minutes at a time, I wanted to know how it would be different since the sensations are similar and she had no answer other than to tell me that I should just have the trial anywayii
    the sensation of the scs at low levels is very pleasant, it feels good.
    it throws a tingling sensation down my legs , and i can control intensity with a remote. it also has 4 different programs..
    the epi trial really isn't that big a procedure it is a needle in your epidural , except in my case , the epi would not cover the toes,, so they said the lami was best. except with a lami , no trial .
    i had a previous ANS scs implanted epidural, it was a disaster. poor coverage , never worked on the pain, sutures didn't dissolve granular
    when they were implanting the lami i got some coveragein my toesm but weak,, i get much better coverage higher up , like my my knee , shin , areas i dont need, there was a trace of coverage , so they placed it. it was better than the epidural attempt.
    i have some pain relief with it , but not that much, not enough to lower my 24/7 meds and i doubt going to lower my bt meds when i increase activity.
    it does work pretty well for my weight bearing pain, since it covers most of my foot.
    i am just wondering now if it ever does work on my type of pain. it was hard to do enough research before hand, since my pain want manged well, very hard to keep your head out of your butt, when either in pain or fighting the pain or bowel problems due to the meds.
    my stinging burning pain is caused by my scar tissue and unstable spine, so i wonder if it works on this type of pain
    cauda equina

    Comment


      #17
      Originally posted by irisheyes
      Hi sandi, I'm new to the website but have dealt with severe chronic pain and muscle spasms. I have been around the same circle of the meds that you listed for chronic pain to replace the oxycontin. Have you tried the fentanyl patch. It lasts for 3 days and has very few side effects. I am also on baclofen and the max dosage is 45 mg per day. hope this info helps. kevin
      Hi Kevin,
      Welcome to the group! I haven't tried the fentanyl patch simply because I have a reaction to adhesive, and I get a nasty, oozing rash from that stuff. That's why they haven't chosen that route yet, but I read somewhere that someone used a nasal spray antihistamine and it stopped that type of reaction so I may try that at some point.
      Thanks for the idea.
      Sandi

      Comment


        #18
        Originally posted by yvette777
        Hi Sandi Have you tried to ask for Kadian, I switched off the oxycontin onto that and like it alot better, it is some form of a morphine but I love it alot better and a extended release as well.
        Thanks Yvette,
        I see the PM next Thursday and can hardly wait. The sweating is really getting to me.
        Sandi

        Comment


          #19
          Originally posted by metronycguy
          the sensation of the scs at low levels is very pleasant, it feels good.
          it throws a tingling sensation down my legs , and i can control intensity with a remote. it also has 4 different programs..
          the epi trial really isn't that big a procedure it is a needle in your epidural , except in my case , the epi would not cover the toes,, so they said the lami was best. except with a lami , no trial .
          i had a previous ANS scs implanted epidural, it was a disaster. poor coverage , never worked on the pain, sutures didn't dissolve granular
          when they were implanting the lami i got some coveragein my toesm but weak,, i get much better coverage higher up , like my my knee , shin , areas i dont need, there was a trace of coverage , so they placed it. it was better than the epidural attempt.
          i have some pain relief with it , but not that much, not enough to lower my 24/7 meds and i doubt going to lower my bt meds when i increase activity.
          it does work pretty well for my weight bearing pain, since it covers most of my foot.
          i am just wondering now if it ever does work on my type of pain. it was hard to do enough research before hand, since my pain want manged well, very hard to keep your head out of your butt, when either in pain or fighting the pain or bowel problems due to the meds.
          my stinging burning pain is caused by my scar tissue and unstable spine, so i wonder if it works on this type of pain
          Mike I am back in PT and although they do try to use the TENS unit, I can barely tolerate it at a setting of 3 for 4 minutes, that's my limit......then it comes off, fast, otherwise it feels as though something is burning.....stinging. It's a nasty feeling.
          I often wondered the same thing, if scs is really helpful in dealing with the kind of pain that I see/hear more often described from CES, and so far, I haven't read glowing reports....
          Most of the time, the reports seem patchy at best, and seem to fade over time.....that is not something that I want to deal with, if I am going to have something invasive done again....I want some decent pain relief.....not total relief because I know that's not a possibility, but decent pain relief would be good.....
          I would probably need a laminectomy placement as well according to the neurosurgeon and that to me, without knowing for sure that there was going to be decent pain relief seems to be too risky in my opinion.
          I know not everyone feels that way, but I do.....
          I hope things improve for you Mike. I know how frustrating it can be dealing with this stuff.
          Sandi

          Comment


            #20
            it has been my understanding thatg TENS has nothing in common with the scs , besides a similiaer sensation, the pain blicking mechanicms are supposed to ber tootally different and nothing similiar as far as pai, at least that is what one doctor told me.
            i do sioi a lot of refeences to tens when someone refers to a SCS, but it upposed to be not the same pain blocking.
            yes i am stil researching if my pain is th etypical pain used for this type of scs, they rush you into things your in pain, you want the pain to stop so you can have a life back, i am seeing rather than attempting to manage the pain, they are to quick to implant something that may have nothing to do with your pain syndrome.
            i found out from a pm doc last week that implants these scs stimulator's that mechanical pain of si joint pain or piriformis syndrome or pelvic asymmetry which causes si joint pain and piriformis syndrome does not respond to the scs treatment. i dont know if that has anything to do with me, i have a unstable spine that causes a lot of my pain.
            i am going to try and call him next week to talk about it .
            cauda equina

            Comment


              #21
              sandim, you might look into getting an intrathecal baclofen pump. This greatly reduces the amount of baclofen needed to stop spasms, and many different pain medications can be added to the pump along with the liquid baclofen. It might help, you should at least get a trial test done to see the effectiveness...it's an in and out procedure at the hospital to check viability of a pump on your spasms. I've had a pump for over a decade, but it contains only baclofen.
              Please donate a dollar a day at http://justadollarplease.org.
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                #22
                Mike,
                When I spoke to the rep from Medtronics,about the similarity in sensation of scs and TENS , she is the one who told me that they are similar, the biggest difference being one is exterior, one interior.
                I have read that scs is not good for mechanical pain, and although with some of the 2nd generation ones coming out now, there is supposedly better mechanical pain relief, I was told and have read time and again, if you are lucky enough to get mechanical pain relief , then it is a bonus but not to expect it.
                Good luck in your discussions with your doctor. Why does he not want to do surgery to correct the instability?
                I wish that I had answers for you.
                Sandi

                Comment


                  #23
                  Originally posted by rdf
                  sandim, you might look into getting an intrathecal baclofen pump. This greatly reduces the amount of baclofen needed to stop spasms, and many different pain medications can be added to the pump along with the liquid baclofen. It might help, you should at least get a trial test done to see the effectiveness...it's an in and out procedure at the hospital to check viability of a pump on your spasms. I've had a pump for over a decade, but it contains only baclofen.
                  Thanks Kevin. They did ask me if I was willing to consider a pain pump, and I said yes. Have you read anything on granuloma's forming on the tips of the catheters? I came across a few studies that were showing those results within a short period after implantation on the tips of the catheters.
                  Seems like everything has a negative to it, when it comes to dealing with these back injuries.
                  A big plus is that my new chair is coming tomorrow, along with my new scooter.....can't wait to see it actually.
                  Sandi

                  Comment


                    #24
                    Originally posted by sandim
                    Thanks Kevin. They did ask me if I was willing to consider a pain pump, and I said yes. Have you read anything on granuloma's forming on the tips of the catheters? I came across a few studies that were showing those results within a short period after implantation on the tips of the catheters.
                    Seems like everything has a negative to it, when it comes to dealing with these back injuries.
                    A big plus is that my new chair is coming tomorrow, along with my new scooter.....can't wait to see it actually.
                    Sandi
                    My name's Bobby. I haven't read about the problem you speak of, but I've heard of it through the grapevine. I asked last time I got my pump refilled, and the RNs/docs said they have had very few problems as the Medtronics' pumps and catheters get more sophisticated. They service hundreds of pumps weekly/monthly (the whole state of MT basically), mostly for pain and not spasticity, and said almost all are relatively problem -free. But it's against ethical standards I'm sure to speak of other patients' problems, so who knows...but I sure have noticed improved pump design.

                    I had problems when I got my first pumps in the mid 90s, with catheters cracking and leaking, and batteries dying, etc. But I haven't had any such problems in at least 8 or 9 years. I also now have a pump that has a big enough reservoir to last 6 months between refills. That's for baclofen, if it's pain medication, you'd probably have to get it refilled every month or two. Which you need to consider if you're getting it for pain, it will cost a lot to get it refilled every month.

                    Good luck Sandi, glad to hear you're getting a new chair and scooter.
                    Please donate a dollar a day at http://justadollarplease.org.
                    Copy and paste this message to the bottom of your signature.

                    Thanks!

                    Comment


                      #25
                      Originally posted by rdf
                      My name's Bobby. I haven't read about the problem you speak of, but I've heard of it through the grapevine. I asked last time I got my pump refilled, and the RNs/docs said they have had very few problems as the Medtronics' pumps and catheters get more sophisticated. They service hundreds of pumps weekly/monthly (the whole state of MT basically), mostly for pain and not spasticity, and said almost all are relatively problem -free. But it's against ethical standards I'm sure to speak of other patients' problems, so who knows...but I sure have noticed improved pump design.

                      I had problems when I got my first pumps in the mid 90s, with catheters cracking and leaking, and batteries dying, etc. But I haven't had any such problems in at least 8 or 9 years. I also now have a pump that has a big enough reservoir to last 6 months between refills. That's for baclofen, if it's pain medication, you'd probably have to get it refilled every month or two. Which you need to consider if you're getting it for pain, it will cost a lot to get it refilled every month.

                      Good luck Sandi, glad to hear you're getting a new chair and scooter.
                      Oops, I apologize for calling you the wrong name, Bobby. I just happened to read some of the studies recently.
                      http://www.anesthesiology.org/pt/re/...195629!8091!-1 This is the link to one of them.
                      I'm glad to hear that it doesn't seem to be something that happens often.
                      I think for me, it would probably be both, pain meds and baclofen or something similar.....hopefully, if it comes to that, it would work better than what I'm doing now.
                      I also got told today that the replacement for the PM is not coming back, so they are bringing in a new guy.....I hope he sticks around a while.
                      Sandi

                      Comment


                        #26
                        hi sandim,
                        thanks for your help
                        i don't know if my pain is really considered mechanical pain, since it is neuropathic nerve pain from my lumbar scar tissue/instability/stenosis. I need to check this out, would really piss me off if this is trrue about the scs not working on scar tissue generated pain..
                        i spoke to 2 different spines specialist neurosurgeons, a couple years apart, one had done my last emergency surgery.
                        they both said that i probably need to be fused from L2 to S1,my injury was l4 to s1,surgery would entail enter through back and front, a very long difficult surgery with a long recuperation and they both don't think the chance of gain is worth the risk since i have so much scar tissue near the the bladder and bowels nerves , i have had B&B and S recuperation, so too much risk to go back near that scar tissue also am very mobile now, they said the chance of me coming out better is not good. One of those doc said he has over 5000 spinal fusions , but just doesn't think I will gain, and both said the risk of loss of use is way too high.
                        they also said the fusion wouldn't stop the shocking sawing pain from scar tissue i have in my foot.
                        Another neurosurgeon that is very respected in my area, I was going to for a consult on removal of my old scs wanted to fuse me without even looking at my whole history, I wasn’t even there for that reason, I realized he was way to knife happy .
                        i am actually very mobile and when no pain, and even with pain managed I do a do alot of stuff, i walk pretty good now with an afo, much better than a couple years ago. i ride a bicycle frequently ( I hope) in good weather. Most of my mobility physical damage so far is limited to one leg and foot.
                        I think if I was unable to do as much as I am doing they may look at it different , it sucks because I am strong and want to be active , but if I push at all the nerve pain gets a lot worse/
                        Last night was pretty bad, but I know how worse it can be.
                        I am on pretty low doses of meds compared to a lot of people.
                        The thing that scares me is my pain will become really bad if I sit or lay down, I can walk so I get up and can shake off or minimize some of the shocks stinging toe pain, by standing and moving. Night time I have to lie down and sit before bed, so it gets worse and worse.
                        I know if I ever couldn’t get out of bed or had to use a chair, the pain meds would reallly rise.
                        Sorry long reply , but it is so complicated, bottom line is the surgeons that are familiar with my spine see I am doing a lot, and it is not worth messing with. They said I need a back transplant, except there is no such thing.
                        i really am very fortunate , i walk, i can ride a bike, if it wasnt for the pain and bowel problems i could do so much more, but isnt that the story with all of us.
                        cauda equina

                        Comment


                          #27
                          Mike,
                          I misunderstood. From what I have read, surgery to remove scar tissue does not have a good outcome. I know that they tried to remove some of the intense scar tissue that I have when they redid my fusion, but it's back, and with more added to it, which seems to be the outcome in most , if not all cases.
                          It is frustrating, and leaves us with few alternatives. My understanding in the case of scar tissue and scs is that because the tissue is so dense and fibrous , that the scs can not penetrate that type of tissue, hence the reason that it does not work as well in those areas.
                          I don't know what the answer for you, or for me, for that matter is, but hang in there. It sounds like for the most part, you get around rather well, and I am not sure if I was able to be as mobile as you , if I would risk surgery without a guarantee of a better outcome.
                          I will see if I can find any of the studies on scs and scar tissue. If I can, I will post them for you.
                          Sandi

                          Comment


                            #28
                            Originally posted by Lee555
                            Sandy I was recently put on Klonopin for spasms in the neck, head (from the Occipital Neuralgia) chest muscles and upper back and it seems to be working very well. This is for seizures and for anxiety, but it pretty much stopped the spasms in their track. I'm only taking 3 half tabs of the .5 mg a day and it is working. Now this is a drug that will probably have to be increased as the body seems to acclimate to it, but it's enabled me to actually work out in the garden for several hours rather than a single hour before the spasms get me stiff. Have you ever been on it?
                            I take Klonopin as a sleep med.

                            Aren't oxycontin and methadone really, really constipating meds? I asked my doctor about them before he upped my dosage of Fentanyl to 75, and he said that his paitents say that those are much more constipating.

                            Comment


                              #29
                              i was on oxycontin for a while, like a year or 2, but once i had to stop it, i had withdrawals something awful. so, we chose methadone, with my backup for breakthru being percocet 7.5 and the muscle relaxer being soma. it all does very well together.. Maybe a different doctor???? i changed doctors in 2005 and have done VERY WELL.. i think doctors are not all created equal.. i am a nurse... your choice of course.

                              Comment


                                #30
                                on the constipating meds.. Really, speaking from experience, anything taken po can be constipating.. i have a lot of trouble with this and have found that over the counter colace works wonders.. if your pain med is working, use colace, its worth it...

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