Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Beware of the placebo effect

j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
edited 06/11/2012 - 8:50 AM in Spinal Cord Stimulation
I don't think the trial period is long enough myself. I see too many people including me. That don't seem to get the relief or coverage they thought they were getting during the trial.
Ive had mine adjusted and tweaked so many times that I couldn't count them all. And I'm just not getting the coverage that I thought I was getting during the trial. I've thought that, well, they didn't get the leads in the exact same place. And that is certainly possible.
I have really questioned myself. The trial didn't last very long at all. And I so, wanted a "magic bullet" so bad.
I'm now considering. Did I have a placebo effect, just because I wanted it to work for me so bad?
I'd never ever even considered that. But recently my brother, (a fellow spiney), Had a P. A. tell him to beware of a placebo effect. When they wanted him to try lyrica.
I have NEVER heard those words come out of any medical professionals mouth!
The cost of these SCS's is unbelievably expensive. And there is much more to having the surgery than they lead you to believe.
To have one put in and not work out for you is one hell of a burden for you and the insurance co. I've heard of many people that have one put in. Just to find out it dosen't work for them. And then have them taken out. What a waste of money. That will certainly drive insurance costs up. And possibly make it much harder to get approval for someone that really needs one.
Personally, I think that those words should be said to a potential SCS candidate. "beware of the placebo effect" And I think the trial should be much longer.
Jus sayin, Jim
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!


  • How long was your trial, Jim?

    Mine was 4 days. It was enough to let me know that I definitely saw improvement. Not complete relief, for sure, but my permanent implant has given me as much as the trial did. It is not complete pain relief and we have still had to work towards a solution for an acceptable amount of pain relief, which sadly means that I still rely on pain medication. But the combination of BT pain meds, the SCS and a timed release pain med have given me a much better outlook and finally I have more good days than bad.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    I think my trial was also 4 days. And I'm quite sure I had better pain relief with far less or no unwanted stimulation.
    I get great relief in the morning while sitting at the table with my back arched and pelvis pushed forward. And I'm pain free until my meds kick in. But then when I stand and go about my daily routine the stimulation moves and I have unwanted stim. And can't stand it. I do have 1 program that I can tolerate for about 30 min. But that's it. So I have to question myself, was the relief what I thought it was or what I wanted it to be. (mind over matter). And if it was what I thought it was. Did they get the leads in the same exact place?
    My main point is, this procedure cost about $60,000 or $70,000. So a person needs to know damn sure that it's going to work for them.
    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!
  • OK, that's kind of dumb. Good doctors WANT to use the placebo effect, on top of the "real" effect. The placebo effect is a real pain relief and is often much greater than any other effect the medication might have!

    So, they should be saying "this should help you a great deal," not "beware the placebo effect!"

    The placebo effect probably wouldn't wear off so quickly. That was probably a coincidental lull in pain levels. However, if you have *real* pain relief and increase your activity, you might find that you negate the pain relief- so be sure to count both the pain relief *and* the amount of activity you are able to tolerate when evaluating a medication!

    Lyrica worked SO well for me- for months. Other meds that I was equally sure would work did not. Unfortunately, the weight it caused me to gain was not funny :(
  • Jim, I have a paddle lead and the placement is off by just milimeters from the trial. It took a lot of programming sessions to get it right. I gather that once a paddle lead is in there, they aren't going to try any "re-do". Could they try to move your leads to get better coverage?
    I will get movement related changes in stimulation, but nothing like you describe. I keep my stimulator on all the time, night and day.
  • j.howiejj.howie Brentwood, Ca., USAPosts: 1,730
    Happy I'm not sure how to respond or if I should.
    But my point is a placebo effect can sometimes be a very good thing. Especially for short term.
    However a placebo effect will wain over time. And if it does and you decide you did in fact make a mistake then if we are talking about lyrica it's maybe $200. But if we are talking SCS implant that would be a $60,000-$70,000 mistake. Not good for the patient, the insurance co. or restrictions it could impose on someone who would truly benefit from it. The medical inflation, or the economy as a whole.
    As for "DUMB" I don't think that's a word I would use on this forum.
    I have asked them to redo the paddle leads. Especially because ANS came out with a new tripole 16 lead especially for lumbar stim. The answer has been NO! twice.
    What I've got is certainly better than nothing. But not optimal. And certainly not what the 3 or 4 day trial was. I got mine 12/06 and have been working on it every scince. In hindsight I wish they'd have offered me Boston scientific, or Medtronic, or what ever has a better track record on lumbar.
    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!
Sign In or Register to comment.