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SCS Stimulator Being Removed!!

patwhite101ppatwhite101 Posts: 1,213
edited 06/11/2012 - 8:38 AM in Spinal Cord Stimulation
Saw my pain Doctor today, the one that did my ANS St Jude EON Mini stimulator implant. He admitted implanting my stimulator was a mistake. I was still on hugh doses of pain meds when I had my trial and should have been off them for my trial. He did not tell me this before my implant.
Anyway...the stimulator is now coming out!! The permanent implant has never helped my pain. Never!! I do not use it.

Stimulators have helped a lot of people but some it does not. I am one of those it does not help and I had such high hopes when I had the implant!! I was crushed when it did nothing for me....crushed!! If it had helped my lower back pain I would have been happy but it actually made it worse. I was told by my rep that can and does happen sometimes.

When I had this implant I was so sure it was going to help me pain like it has for Haglandc. BionicWoman, Cherish, and Stockbroker, to name a few....but unfortunately it has not. I have no problems at all with the stimulator other that it does nothing for my pain.

But I still have hope. This same pain Doctor referred me to a Doctor who does pain pump implants and I have an appointment to see hem the 12th.
My stimulator will be removed sometime after the 12th. of this month. I will update everyone on how it goes having it removed.
He did say I would be sore and in some pain but I would be asleep during the removal. I am so happy of that....I was wide awake for the implant and it was ROUGH!!

Patsy W :H


  • I'm sorry the stimulator didn't help you. I hope you find some relief. Susan
  • TRY TRY AGAIN!!! Okay, Patsy, let's get this bad boy out and on to the pain pump. Would be nice if you could get it before Christmas -- now that would be an awesome Christmas present!

    Got your back girlfriend and holding out for much better outcome for you. Can't wait to hear from MeyDey to see how she's doing with her new pain pump.

    Take care of you and Pepper,

  • Thanks ladies for taking the time to leave a comment.

    Yes...I am happy to have the stimulator removed although I have never had any other problems with it other than it does nothing for my pain. I did worry about the battery leaking down the road. That can and does happen.
    I did not want to have the pain pump AND the stimulator both in me.

    I am going to ask to keep the battery pack. May make a necklace out of it. It would be one of a kind wouldn't it? LOL And it is kinda cute.
    Patsy W :H
  • if they would let you keep your battery pack. I would have never thought of asking to keep it. I would like to know if they do let you keep it. I think it would be neat.

  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    If it's just there, and not doing anything for your pain. but not causing you any extra pain. Why take it out? It's not hurting anything to be in there and not in use is it?
    Mine did not work either. And being in there may be a constant reminder that one more "light at the end of the tunnel" was snuffed out.
    But if it is not hurting you what does it hurt to be there?
    I ask, because technology is constantly improving and it has been a fact that they do not work that well on low back pain. But at any given time they could come out with new leads that could target low back pain. I know they are working on it. And I have heard about a tripole lamitrode 16 leads that may target low back pain. without the unwanted, unpleasant stimulation in areas where it bothers you.What if they came out with something that would work for you 2 or 3 mos. after you take it out?
    Just throwing that out there.
    Good luck, Jim :? :D
    Click my name to see my Medical history
    You get what you get, not what you deserve......I stole that from Susan (rip)
    Today is yours to embrace........ for tomorrow, who knows what might be starring you in the face!
  • I would be in no rush to have it removed, but, mine does do some good, It's hit or miss some days, I have gotten used to it and try to take it for what it is worth.
    If mine failed to work, could not be made to work, I would probably leave it for a while. Not for more than a year or two though. Just my thinking, but the SCS rules out mri and that battery...

    Now, if I was Patsy I would have to ask them to do the removal when they do the pain pump. If, they can do that.

    Technically the device is yours, your insurance paid for it. You should be able to request it. I still have the rod from my clavicle somewhere, they ran it through sterilization first, then bagged it and gave it to me.
  • Jasque....yes I think keeping it will be neat. Gonna ask them to slip it into a baggie for me. LOL

    Jim....I understand what you are saying but I did have stimulation in my lower back, right where I needed it(my rep is very good) but all it did was make my pain much worse. I also have stimulation in my legs right where I need it but it just does nothing for my pain. As I said I am seeing a Doctor about a pain pump amd I do not want both devices implanted in me.

    Wrambler...I see no reason to keep this implant any longer. It does not work for me at all....not even hit or miss. I have tried it at different times and at different pain levels hoping I would see some relief but no...it just does not work for me. I was on much higher doses of pain meds when I had my trial but my GP decided he would not write anymore scripts for such high doses of pain meds. Now that I am on a much, much lower dose and I really need the help from the stimulator. Unfortunately it does nothing for my pain.
    Patsy W :H
  • There has been questions about having a stimulator remved in the past. I searched back through old threads looking for someone who had theirs removed and only found one person who had.
    Now that more and more people are having this implant I am sure the question of removal will crop up.
    I am NOT posting this to bash the stimulator in any way but to inform and I do hope people will see it this way.
    Patsy W :H
  • I'm glad to hear your doctor will work with you. I didn't know that staying on strong narcotics might hinder the stim trial results. When I had my stim trial I was on my ER and IR meds. This is very interesting.

    Anyhow, you're absolutely right about what works for someone won't work the same way or not at all for others.

    About the pump trial and surgery, I did not have any of my meds reduced or had to stop them altogether. It takes time for things to get better when you make the transition from oral delivery to intrathecal delivery, and that's why you may stay on your regular meds longer. Of course, each doctor has their way of doing things and some may choose to get you off everything before implanting the pump.

    It's best to talk to the doctor who's doing the pump surgery and the one who is prescribing your Oxycodone so that they can make a plan of action together and be on the same page. You need to know how your pain will be managed before you go in for surgery. Take care
  • well, maybe, just a little but WTH, if the horse is dead, he doesn't really care anyway, right? Several times you have mentioned that you should have stopped taking your pain meds (or cut down on them--I'm a little fuzzy on this one---) WHY? If I'm taking 4mgs. Blah and 6 mgs. blah-blah and now I add the stimulator, I can truly tell whether I'm feeling better or not, just a little or a lot. If, once again I'm taking 4mgs. blah and 6 mgs blah-blah and now I must stop the drugs and start the stimulator, I have introduced an extra variable into the mix. This just isn't good medicine. If I'm taking 4mgs. blah and 6mgs. blah-blah and now you have me stop for a period of several months before you try the stimulator, you have eliminated the extra variables but, again, I'm not sure the purpose. I had my trial while taking my usual pain meds. As it turned out, I did not take my breakthrough meds while I had the stimulator so this certainly told us something. I cannot imagine someone saying you're continuing to take the pain meds would skew the results of the trial. (Remember I am the logic teacher -or was- but the knowledge is still there.) In fact, it seems to me that stopping your pain meds would introduce a whole other set of variables that would have to be factored in to determine whether or not the stimulator had any benefit. I think, however, we've been through this before. The point is, you don't like it and you want it out. To that end, I once again wish you the very, very best and hope you find some kind of relief. Please keep us informed as to how things come ouy (pun intended.) Susan
  • Patsy -

    Obviously this a personal question that you don't have to answer, but you keep referring to it, so I keep wondering...

    What meds/doses were you on before/during your SCS trial?
  • Wanted to add my two cents as far as taking your meds during the trial. My Doc did not instruct me to stop taking my meds at all. I truly believe had I stop taking them, I would have deemed my trial a failure. The stim reached quite a bit of my pain but it did not touch what I call my hard pain. Without meds, this pain is very uncomfortable and makes my daily life miserable. The Doc who is doing my perm implant has indicated that the stim will probably not touch my hard pain based on my description of how it feels and where it is. I have no expectations of becoming drug free, but I do hope to at least reduce what I take for the time being.

    I wish you luck on your removal surgery and hope everything works out for you.

  • Hey Patsy!

    Jim (I think) had a good point - about removing the stim at the time the pain pump is put in. That way, it's one hospital stay, one operating room, and maybe will save a few bucks here or there for either you (deductible or co-pay) and for sure the insurance (if you have it).

    Of course, because that will save money here or there, I'm sure everyone (medical professionals) will probably say "What? Are you NUTZ? We can't do that!?!"

    My Mom is still in her adjusting phase. I did ask her doc about Physical Therapy and she is on week 2 with that. She's had some really "good" days in a row - of course followed by "sore" days. But she and I are estatic about those good days. Hopefully soon we will get her morphine dose at a therapeutic level for her.

    Hope your experience with the pump is a good one!

    Take care now - and keep us posted!
  • I think the biggest iffy part of being on meds while doing the trial is the fact that the meds can also dull the sensation of the SCS.

    It is hard for me to get into words, but, maybe I am doing it? The SCS is much more annoying in its own right without meds. It still dulls my pain, but it has an annoyance factor to it that is more pronounced now that I do not take Narcotics.

    For people who's drs have no expectations of the patient ever being completely off drugs, doing the trial with meds on board is no big deal at all. When you get the dr that insists that with the SCS you don't get the meds, well that kind of throws a big old monkey wrench in the works.

    It's not going to be like this for everyone, but for some of us the SCS is a little less wonderful once the narcotics are removed. Hey, Patsy could have had excellent trial results meds or no meds and still ended up with a permanent placement that failed her. The numbers are out there, these things happen.

    For me, I was having a lot of difficulty balancing the annoyance level of the SCS against my pain level, until I added in Valium and Flexeril. Oh, and that whole thing of finally getting a correct diagnosis of Bipolar Type II :D Funny, being glad about having a mental condition. The glad is not about having the condition. The glad is knowing what the problem is/was and seeming to be in a treatment plan for it that is working.

    My point is simply that Medtronics recomends patients not take narcotics while doing the trial. My second opinion PM said he would wean me off before doing a trial. My current PM said nothing about it, I hurt, I sure as #e!! was not going to volunteer to stop and be in more pain. Maybe if I had stopped all narcotics I would have said NO to the implant? Since it does help, would that have been any help to me? Would I be better off than I am?

    Hmmm, I think I'll shut up now as I have completely ran on way to long...

    Patsy, keep us up to date on how things go!
  • I want to thank everyone for taking the time to leave a comment. ALL comments are appreciated.
    I would answer each and everyone of you but right now am in to much pain to sit here long.

    Wrambler....I know my shoulder pain is not as bad as yours but right now mine is throbbing and using my right arm is very painful. Thamk you my friend.

    Dave.....I think this may be the "hard" pain you are talking about. Also my feet and legs pound and throb right now. Oh my....I think this may be the night i weep.

    Again thank you everyone. I will try to answer all your most welcome comments at a later time.
    Patsy W :''(
  • Wrambler said:
    My point is simply that Medtronics recomends patients not take narcotics while doing the trial.
    I don't mean to be a stickler, but can you point me to a reference for that information, as it pertains specifically to the trial placement?

    According to the FAQ on Medtronic's website, the answer to the drug question is a most definite maybe but maybe not -

    Can I have pain medication during the screening test?

    Your clinician may reduce or withdraw your oral medication 1 to 2 weeks prior to the test. During the screening test, oral medication may be given for breakthrough pain. Never stop taking your prescribed pain medication without first consulting your clinician.

  • To everyone, I am sorry I stated that Medtronic Recommends or recommended stopping narcotics when doing the trial, I see that is no longer the case. I wonder if the doctor I saw in Pittsburgh has changed his recommendations?

    I also know BW intended to simply make sure the facts are correct.

    NOTE: this post was much, much longer, but....I now feel that what I had to say is inappropriate for the general forum. I will add, a simple PM would have let me see the error in my ways and I would have changed the post.

    Thank you, for not allowing me to do that.

  • I totally get what Dave says about "hard" pain. This is how I see things- that pain is always there no matter what you use to relieve it. In other words, I think that it really wouldn't make a difference if you get off all narcotics before a trial, stim or pump. Nothing out there can totally eliminate our kind of pain IMHO. However we proceed is based on what our doctors think is best. Ones like mine kept me on my meds as usual while others say wean off everything first.

    Wrambler, I agree that it takes a variety of ways to attack chronic pain and that one can certainly compliment or supplement the other. I think that you should be able to use oral meds along with stim to get the best results if just the stim alone isn't quite cutting it. The same applies to the pump. If you get for example 70% pain relief from the stim/pump, then you need something to help out with the remaining 30.

    Hey Jeaux, how long did it take for your mom to start PT? I'm so glad to hear about her progress. My doctor says it takes time, maybe a few months to get to that therapeutic dose. I had mine adjusted recently and I will keep going back to have it titrated as long as I can tolerate its effects.

    Patsy, I hope today is a better day for you and I hope you got some much needed rest yesterday. Let us know how you're doing and I'm sorry you're not feeling well. Take care >:D<

  • My two cents...not worth a penny, or two...but here it goes.

    My PM doctor said that SCS will not totally take everyone off medication. He said to continue to take my daily pain meds and see if they reduced on their own. I did exactly that didn't take a BT med the entire time of the trial. After my permanent implant he told me to remember that I may always need pain meds...thus the SCS is a tool to help manage not cure the pain. There are many reason for a trial to go good and permanent to fail. It is a risk you take. I am not totally off pain medication but I have reduced them to a point that I am happy with. I am not a zombie, I have quality of life back. Personally I feel if you are taken totally off pain meds before the trial you are throwing too many variables into the mix and who knows if the SCS is helping or not because you are dealing the the pain without the daily help you are use to. I understand that some doctors do things different...I am just saying my opinion...do don't shoot this old dog for opening her mouth to put in her two cents.
  • I suppose I could have sent a private message with the question, but then there wouldn't have been a public conversation to clarify the issue for anyone else that is following this thread.

    With over 200 views of this thread in just 4 days, there must be people following but aren't posting.
  • I will not be commenting in this thread about the meds I was on during my trial and the meds I am now on. This is about my SCS removal. I will leave a comment Wenesday after my visit to this new PM who may be doing my pain pump implant and I learn of his views on this prosedure.
    I will be starting a new thread about my pain meds and why it is important for me to always bring them up when I talk about my trial. That subject seems to be of a lot of interest to people...but this is not the place for it, in my opinion.
    I am sure those of you that have the spinal cord stimulator (SCS) implant will have a different opinion and can express their viesw in the new thread that I will start tomorrow.
    Thanks for understanding and I will look forward to reading your comments and your thoughts.
    Patsy W :H
  • My PM's office called this morning.
    I will be having my stimulator removed on Dec. 1st.

    My PM though it was a good idea to remove it because it is doing nothing for my pain. He also said he did not feel that working with my rep more would be of any benefit.

    I really do not know why the permanent implant has failed me. All I have to go by is what my PM has told me. His explantion made sense to me but I also know of a few other who have had the same problem. Good trial but the permanent also failed them.

    Because the stimulator has failed me does not mean it will not help you. It has helped a lot of people and now that Doctors have this option, a new weapon against pain, more and more people will be getting them or being given that option.

    IF your pain is being controlled with pain medication I would not have ANY implant. Bit this is just MY opinion. Just like any surgery it does come with risks and serious complications.
    To be considered a success the stimulator should reduce your pain by 50% or better.
    I am not walking in your shoes so I will NEVER attempt to tell you how to manage your pain....how you do that is a personal choice. You must do what you think is best for you.
    Just as I must do what I think is best for me.
    I will update you on my stimulator removal.

    Best of luck to all
    Patsy W :H

  • You know, I heard some time ago that while a patient may have a good outcome during their trial- stim or pump- that for some reason it is not replicated after it is implanted surgically. This is something I'd like to find more info about because it is so strange how this can happen. I have seen it listed as a risk with both stim and pump while researching online.

    Well, now you only have a few weeks to go before you'll finally have the stim out. At least it will be out of the way before the holidays, huh? Sorry things didn't go as planned with the stim but now I hope that the pump trial will get you much needed relief. >:D<
  • Yes....It is a puzzle isn't it and I am just as puzzled as everyone else is.

    Perhaps this new PM I see tomorrow may have some ideas. Actually he is a Neurosurgeon and I should not be referring to him as a PM. My mistake...sorry.

    If he does not feel that I need a pain pump yet hopefully he will refer to a Doctor or another pain clinic who will work with me treating my pain.
    I just know that i am at my wits end with this pain. It is taking it toll on me.

    Thanks Meydey
    Patsy :H

  • Is he a neurosurgeon specializing in pain management? Or is he just a run of the mill neurosurgeon?
  • And prey dear girl....What do you mean by "run of the mill" Neurosurgeon? And why does it matter?

  • Well.. a run of the mill neurosurgeon would be one that specializes in surgery.

    I was under the impression that the doctor you've been waiting to see was a pain management specialist, and I think many others were too. The term swap in your last post makes it kind of confusing. :/

  • My current PM will be removing my stimulator! he also implanted the stimulator.

    The Neurosurgeon will implant the pain pump, which falls under the category of pain management, does it not? So I would say he also specializes in pain management although he is a Neurosurgeon.

  • As far as I can tell, the quickest way to find out if a doctor is a pain management specialist or not is to check his credentials....? A neurosurgeon doesn't become a pain management specialist just by virtue of their willingness and/or ability to perform a surgical procedure involving pain management equipment.

    Pain management is a sub-specialty that requires education and credentials beyond those required for neurosurgery. Many neurosurgeons do SCS implants and pain pumps, but they aren't pain management specialists; their specialty is surgery and that's the knowledge and skills that they bring to our care team.

    My SCS was implanted by a neurosurgeon and on my first visit, he explained his role to me using the analogy of race cars. He said: "I know nothing about driving this race car, because that's not my job. My job is to be the mechanic and install the parts properly, so that this race car runs perfectly and safely. The pain specialist is the race car driver and once I put the parts in, it's up to him to win the race."

    I saw that neurosurgeon for a consult visit, my pre-op exam, on the day of the surgery, and for a post-op visit. That was the extent of his involvement in my care. After that post-op check, I took the keys to my race car back over to my pain management doctor and he's been behind the wheel ever since.

    In your earlier posts, it came across like this neurosurgeon was going to replace your current pain management doctor - at least that's how I read "new PM doc." But in the last few posts, it sounds more like you're sticking with your current pain management doctor as the driver and this neurosurgeon is simply a mechanic on his pit crew.

    I'm a bit baffled by that, partly because I think your posts are confusing, but also because I don't know anyone that would be scheduling a completely elective surgery with a doctor who has acknowledged the mistakes that have put them in a situation where they have to "hope some Doctor will step up to the plate and help me." And certainly not while waiting for an appointment with the doctor they're hoping will step up to that proverbial plate. :/

  • I will update everyone on my SCS removal after Dec first.
    Thamks for the comments.

    BTW....Learned a lot from my new PM why the stimualtor failed me and there is no need to keep it in because it will never work for me.
    Patsy W :H
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