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    Stimulators

    Hello Everyone...I am scheduled on the 26th of this month for a one week trial procedure for a stimulator. I was just wondering if anyone out there has any information for me regarding their own experiences or any knowledge you might have about Stimulators. Thank You to All of you who read this .
    PixieGirl C 567 9-30-10

    #2
    This is where my ignorance steps in and my Doctor is tight lipped.
    I was only told that he thought i was a perfect candidate for one.
    he failed to mention the type nor did I know to ask.How many
    different types are there? Thanks smashms for the reply.
    PixieGirl C 567 9-30-10

    Comment


      #3
      i hope your'e not serious, I'm almost hoping this is a troll. Having a spinal procedure and the doc won't tell you anything? get real.

      btw search on them they get mixed and bad reviews along with serious long term issues.

      ket
      Kindly,

      The Ketamine Kitty

      All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

      Next time I die make sure I'm gone,
      don't leave 'em nothing to work on JT

      And I ain't nothin but a dream JM

      Comment


        #4
        I had a bladder sitmulator implant 40 years ago that never did work. Doc told me the same thing about being the perfect candidate, don't believe any of them and do lots of research!

        Comment


          #5
          I'm not sure what a "Troll" is bollen..but I asure you,I do not live under a bridge. I was unaware that there are different stimulators for didnt areas.Thank you for that insight Oldtimer. Like I said I am new to all this and have yet to accept or understand.(C5,6,7).There is still a fog that surrounds me that makes the simpliest of tasks difficult for me to roll through my daily routine. The Stimulator I am scheduled to have is where leads are implanted under my skin just above my spinal cord. Mine will be implanted in my lower back.I will have a remote control which I can adjust to alleviate pain in different areas of my body. I apologize for the confusion. Thanks smashms,bollen and Oldtimer
          Last edited by PixieGirl; 16 Jan 2012, 12:20 PM.
          PixieGirl C 567 9-30-10

          Comment


            #6
            Always, always get 2nd, 3rd, 4th, 5th etc. opinions before you set your own mind. It is your body, not the doctors and they have nothing to lose, you may. Please, think everything over good so you have a clear understanding. Surgery is surgery.

            Comment


              #7
              There are people out there that just go to doctors and do as they are told. I was lucky enough to have a Doc who was honest and frank with me. Ask many questions, over and over. Are there truly those who would come to a site like this and pretend to be injured, and o my damn why?

              Comment


                #8
                Hey pixie, a troll is a one time poster or antagonistic poster. Someone from medtronics or involved with them or whatever, starts a new profile every few weeks discussing the miracles of Spinal STim and medtronics.

                Considering how few of us here who have them have had positive results I worry about stim posts, keep the trolls out and for the real ones, for your own good read every post on them here.

                From lack of efficacy (positive outcome) to life threatening infections to serious implications such as no more MRIs the single most effective diagnostic tool for SCIs.

                I have one, and not only did it never work past the initial trial including multiple revisions, pulling it loose and finally having it sewn in, when I had an issue that needed an MRI I couldn't get it. My surgeons will also NOT remove it. After more experience, they are extremely concerned that with the amount of time it is in and the scar tissue around it they will likely do severe damage to actually irrepairably tearing the dura.

                I would really suggest you become much more proactive about this. btw I was not a member of this board when I got mine, wish I was and could see other folks experience. I believe i was really deceived about them and therefore easily pushed into a non-reversible situation.

                ket
                Kindly,

                The Ketamine Kitty

                All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                Next time I die make sure I'm gone,
                don't leave 'em nothing to work on JT

                And I ain't nothin but a dream JM

                Comment


                  #9
                  I agree..I should have a 2nd opinion or even a 3rd 4th and so on as you sugeest Oldtimer. I think evtrala you got lucky when it came to the doctor department. I am green with envy. I dont know either why or what would make someone want to deceive those of us who are really looking for answers and reaching out to others for insight.People now adays..some have hidden agendas.
                  Thanks for the lesson in Troll 101 bollen.I guess from what you said its a SAD reality and it makes me sick.So...as far as your stimulator went..correct me if I am wrong..yours worked so you had it surgericaly implanted?Im not clear when you mentioned that it was getting pulled loose.Was that during the trial? Can I ask a little bit more about your injury and what were you trying to accomplish by getting your stimulator.I guess in my case..when I was told I was the "PERFECT" candidate everything else around me went silent.To go through my day without pain.Without my feet feeling like cement shoes.No more knees feeling as if they got slammed in a car door.Then the best of all..not having my A$$ feel like it was on fire was like winning the 32 Million Dollar lottery.For me..even though I am paralyzed from the waist down,I have COMPLETE feeling and slight movement.at first I thought..WOW what a blessing to be able to still feel everything..which dont get me wrong it is without question.However it makes life close to unbearable and my pain meds DO NOT work.I hope you can see to why it is I jumped on that band wagon unknowing to what is to come next.The date is fast approaching.I have waited months for my insurance company to approve this and now I am filled with excitement and doubt. Thank You everyone for your opinions and suggestions.I want you to know I appreciate your willingness to help me.I have started doing research and plan on asking questions.To be honest..I have not cancelled my procedure yet. Have a Great Wednesday where ever you are. Will keep you posted.
                  Lorraine
                  PixieGirl C 567 9-30-10

                  Comment


                    #10
                    I'm an incomplete, injuries at T6-9 and L3-S1, fused L3-5. Ambulatory, foot drop and weakness more on the right than left, Hvae B&B with occasional hiccups, loss of control.

                    I have Central Pain, Neuropatic Pain, nociceptive pain and radiculopathy (if not covered already) extreme chroic pain across my sacrum, Burning ass, Sciatic and peroneal nerve branches damaged, crushing foot constant sciatica, constant burning and shards of glass ripping alonf the peroneal system, undiagnosed tone and spasticity primarily on my right. spasms from shoulders to toes.

                    Pain bad enough I vomit frequently and will pass out when it reaches its max.

                    Had the stim trial. while in the hospital for the initial insertion i had reduced sacral pain and smal but meaningful nerve pain relief.

                    Upon taping me up for the three day test they said I'm perfect. 1 day later I was in the docs office with a horrific infection and dermatitis reaction of some sort to something, they immediately took out the stim. But again confirmed I was perfect candidate.

                    After 6 weeks they put it in permanently, stim inserted from sacral area up, box left of my spine on the left. Medtronics tech tried to dial it in for 5-6 successive weeks - bi weekly, no efficacy. Xrays "suggested" the wires moved. Extracted replaced. same thing, retracted but inserted via a partial laminetomy at the T level and sewn in to prevent it shifting.

                    Spent 3-6 more months trying to dial it in and gave up. The doctors did not want to remove it said give it a rest and retry, so I did. Nothing. Dccs said leave it and avoid any extra surgery to remove, but could be extracted anytime ...no problem.

                    2-3 years later a cervical complication requiring an MRI OOPPPS Stim can't do that. Neurosurgeon said he can't take it out, they've turned out to be extremely problematic and removal and disruption of the extensive scar tissue had caused paralysis and torn duras with catastrophic results.

                    So they tried a Myleogram but the dye would not go up the spinal cord due to the extensive scarring, so they said they get a top down injecting at the base of my skull so the dye would flow down normally. No doctor between Boston and Washington DC was willing to do this type of myleogram. With the aadvent of MRIs no one had enough experience they would do it as it is very high risk.

                    No pain meds work, narcotic or the nerve oriented classes. I have tried everything and remain suicidal for over 7 years due to the extreme pain. Tried every alternative therapy available. I can and do sympathize.

                    Net ...I'm fucked and some day, sooner rather than later I will end this.

                    I don't know what to say. It seems they are most viable for lower pain levels or different causation than SCI. I wish you every good outcome.

                    ket
                    Kindly,

                    The Ketamine Kitty

                    All the tears, all the pain, all the rage through the night (apolgies to the rewrite) RR

                    Next time I die make sure I'm gone,
                    don't leave 'em nothing to work on JT

                    And I ain't nothin but a dream JM

                    Comment


                      #11
                      i was also told to get a sim to control my pain, i take 6 10/325 percocet a day and have severe numbness, pins and needles, burning and all sorts of pain from my back. i have a post if you guys want more on me. i told the surgine no when he said to get one because i met with 5 people that it didnt do anything to and also had alot of after effects to it.. so PLEASE READ EVERYTHING YOU CAN FIRST.

                      Comment


                        #12
                        Originally posted by PixieGirl View Post
                        I agree..I should have a 2nd opinion or even a 3rd 4th and so on as you sugeest Oldtimer. I think evtrala you got lucky when it came to the doctor department. I am green with envy. I dont know either why or what would make someone want to deceive those of us who are really looking for answers and reaching out to others for insight.People now adays..some have hidden agendas.
                        Thanks for the lesson in Troll 101 bollen.I guess from what you said its a SAD reality and it makes me sick.So...as far as your stimulator went..correct me if I am wrong..yours worked so you had it surgericaly implanted?Im not clear when you mentioned that it was getting pulled loose.Was that during the trial? Can I ask a little bit more about your injury and what were you trying to accomplish by getting your stimulator.I guess in my case..when I was told I was the "PERFECT" candidate everything else around me went silent.To go through my day without pain.Without my feet feeling like cement shoes.No more knees feeling as if they got slammed in a car door.Then the best of all..not having my A$$ feel like it was on fire was like winning the 32 Million Dollar lottery.For me..even though I am paralyzed from the waist down,I have COMPLETE feeling and slight movement.at first I thought..WOW what a blessing to be able to still feel everything..which dont get me wrong it is without question.However it makes life close to unbearable and my pain meds DO NOT work.I hope you can see to why it is I jumped on that band wagon unknowing to what is to come next.The date is fast approaching.I have waited months for my insurance company to approve this and now I am filled with excitement and doubt. Thank You everyone for your opinions and suggestions.I want you to know I appreciate your willingness to help me.I have started doing research and plan on asking questions.To be honest..I have not cancelled my procedure yet. Have a Great Wednesday where ever you are. Will keep you posted.
                        Lorraine
                        PixieGirl, at this stage it is just a trial so don't stress too much. I've recently just finished my second trial for a Boston Scientific unit and a relatively new company (using a much higher frequency that you can't feel) called Nevro. We tried all sorts of combinations and lead placements and I had no pain relief. This was a big let down, but now at least I can cross it off the list and keep looking for something else. My background; T12 complete after sleepwalking accidient in 2007, I suffer pretty bad Central Neuropathic Pain and no pain meds really help so I just dumb everything down with a 100mg fentynal patch every 2 days. Life's pretty crap because of the pain, but I haven't given up! Anyway, I recommend you take a bit of time to learn a bit more about the unit they want to trial (you're pain doc should at least give you a brochure and my pain doc insisted I have a psych test prior to my first trial to make sure I was informed and mentally suitable for the procedure should I decide to go ahead). If you're happy with the hassle of having the wires hanging out of your back and having to lug the controller (about the size of a tv remote) around with you everywhere (no showers etc) for about a week, I would do the trial. It doesn't lock you in to anything. For my trials I was put under a general anesthetic, but taking the leads out at the end of the trial is very simple with no anesthetic required. If you get great response then you'll probably decide to go ahead once you've spent a lot of time looking at the pro's and con's, if you get moderate response the decision will obviously be a bit harder, and if you get poor reponse you won't need to waste any more time with it. But at this point you will need to be well informed to make the decision and I definantly wouldn't be swayed by what any of the docs say as they're not the ones having to live the pain. I have read on this forum where people have had a poor result from the trial and their doc has convinced them to go ahead with the stim implant because they were "PERFECT for this treatment" in theory. If you decide to go ahead, I recommend you arm yourself with knowledge.

                        Good luck,
                        Geoman
                        "Wheelie Wanna Walk!"

                        Comment


                          #13
                          Thank You insinuatorx for sharing with me your personal pain along with what you have heard about stimulators. I do plan to follow up and read your post. Geoman its true..it s just a trial and not really much to get worked up over. I was just looking for any information anyone had to give me.Thanks for what I took in as positive feed back. Since my first post I have been given alittle more information on whats to come. My stimulator will be placed at my lower back and since its just a trial Yes there will be a wire taped to my back. The remote control is small, the size of an makeup compact. Yeah the whole shower thing sucks but atleast I can sit on my shower chair and wash whats most important. Geoman pretty much all the information you supplied me with..well thats pretty much it. I have decided to go ahead and go for it. I will keep you posted. bollefen..thank you Sir. I will be leaving you a message on your profile.
                          PixieGirl C 567 9-30-10

                          Comment


                            #14
                            i have had 2 of them implanted . None od them worked. Lied to by the docs
                            the second time around and the representative for boston scientific went way over the line as far as talkimng to me and callinmg me when i wanted to speak to the doctor.
                            They gave me percenrtages like 80% 90% slam dunk , how many surgies did you do implanting thse , 300 a year for a lot of years, what is your infection ration , this is where the real scam comes in, the surgean , who is one of boston scientific teachers and travels al over the world teaching anf promting this scs, says goose egg and holds up a zero figure with his fingers. i guess he was being careful if he was being taped. Niow i asked a question of how many infections , and the answere is gooose egg and a hand sign for zero is displayed. i spoke to a couple do tors i know, and the best surgeans, still ha e infectioms, you dont inpant 900 of thse of 300 a year plus and have zero. so i should check, but i dont know where, since the doc is not going to tell the truth. ALSO 80 OR 90% was pure bulllshie, i called boston scientific and they said they dont even keep any records on
                            success ratio. No records at all on failures or winners. But the docs and reps tell youi a much bigger story. i have CES , i found out later that the sucess ration for ces is about zero. I didnt realize it but they implanted it saying i had rsd, since rsd is the big catch all that they can gwet insurance approval for on sSCS, Mine ids the slam dunk gold standard, permenet placement in my dure matter with 8 paddles i think. Havent tirned it on on a year.
                            if you have good pain releif with the temp , and i mean good, lower your meds mu a lot, you may be ok. i made the mistake , since i had a lot of pain from the surgery , that i was taking a lot of meds , and wanmted it to work, since i knewthe depression wouls be a killer.

                            good luk and bring an advocate, so if the pain releif is not really good wioth a lot less meds , have your advocate stopp them from talking you into it. This is what they did to me, Kept talking me into it, Telling me it may have to set. on my foest i had about 7 revisions, no pain releif and and infection.
                            Thjis one is permanet, but no paoin releif.
                            They make a ton of monet implanting these, the docs and the reps, a ton of money.
                            As everone says here, no positives, just trolls, qat least for sci, sorry about the spellinmg got to go to sleep.
                            cauda equina

                            Comment


                              #15
                              Hey There metronycguy...its seems that you just might be a vetern at all this stimulator crap.Thank you for giving me an look into all that you went through in regards to these devices that are just suppose to make us feel better. I appreciate all the insight and basically a list of questions I should and will ask. I apologize but I have no clue what CES is.I find that each reply I received from those of you who had up close and personal experiences with stimulators..were not only unsuccessful but had not so grand side effects.You seem to have had awhole new experience.As I read on my jaw began to drop a little more.I am in amzement at your story.It is a shock.I am so glad I decided to put this question out there.I got alot of good feed back that really made me put my thinking hat on.I actually put a call into my doctor.He personally called me back.After going over my questions and concerns.He decided not to do the trial on the 26th.Having a MRI on the 31st and will be going in on the 1st to go over the xrays.A representive from the stimulator company will be on hand to answer my questions and to provide me with more knowledge.I feel tons better at this point.I was corrected as well by my Physican.Iam having a "Stemulator" implanted not a "Stimulator".Whose to say this will work for me or not.Maybe its just a nice idea but needs more time on the drawing table.All I know is that I cant continue without atleast giving it a try.Thanks everyone.I will keep you posted.
                              Last edited by PixieGirl; 29 Jan 2012, 2:17 AM.
                              PixieGirl C 567 9-30-10

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