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Concerned

AnonymousUserAAnonymousUser Posts: 49,512
edited 06/11/2012 - 7:48 AM in Spinal Cord Stimulation
I have become increasingly concerned the last few months over the developing attitude that spinal cord stimulation is okay to try even without addressing the root of an individual's problem.

Normally I would stay out of a discussion like this, but this really worries me based on the direction this developing attitude is sending the mindset of different state governments and health insurers. Just recently in my own home state, there was a push to consider policy changes that may limit patient access to important therapies such as spinal cord stimulation. Since it is a very expensive therapy government officials are looking towards it as a way to cut expenditures from their budgets.

As patients we ourselves are somewhat to blame for this because we are driving the numbers through the roof in regards to trial stimulator and permanent implant failures. In a desire to find relief from relentless chronic pain, patients are seeking out spinal cord stimulation versus seeking out other conventional or traditional treatments and possible surgical interventions. Some are even seeking it out, because it appears to be the "latest and greatest" pain management device.

Until recently, spinal cord stimulation and drug pumps were deemed a treatment of last resort. Now it seems that patients and financially challenged companies are campaigning to move one or both therapies into more of the "avoid surgery" category. By doing this they/we are beginning to create the statistics needed by governments and insurance companies to show how "ineffective" spinal cord stimulation is. When in reality spinal cord stimulation is extremely effective in the right cases.

Better patient screening should be being carried out by doctors and "jumping on the bandwagon" requests should be discouraged.

Also jumbled up in this mess, is the issue with regards to the long term use and prescribing of opiates. The more that the government cracks down on PM docs to "squelch" prescription drug abuse the more inclined they are to recommend spinal cord stimulation versus drug therapy.

So what can we as patients do?

What as patients should we do?

Just some thoughts on a subject near and dear to my heart.

"C"
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Comments

  • Yes!
    I live in rural mid USA and I advocate a support group for SCS'ers. What I have been seeing is that it's the DOCTORs who are pushing these units (moreso than patients requesting them - most patients are scared and very leary of the SCS) and it almost appears as tho the Dr's are pushing them because of the huge kickback they get financially.
    It is unbelievable to me that the average cost of a SCS(including the trial & permanent surgery expenses) is around 100K !! And I'm only speaking of the percutaneous lead implantation....not the more involved (laminectomy)!

    In some cases patients seem to actually be getting blackballed! If they 'don't' try the SCS, the Dr will turn their nose up at them and lead the patient to believe they are crying wolf with their pain.
    And yes, I agree regarding the DEA/controlled med issues......From what I'm seeing in my neck of the woods, it's as tho it's the doctors 'easy way out' to push the SCS because they don't want to hassle with the 'little stuff' ie: prescribing long-term pain control. IMO the 'war on drugs' has gone WAY over the top, leaving chronic pain sufferers with inadequate pain control, which is driving the suicide rate UP! No matter how you slice the pie, the recreational drug users win.
    This is just what I am perceiving from my neck of the woods. Hopefully you'll get more feedback from folks in urban areas.

    The immediate future in our healthcare is a VERY frightening thing......it's like watching the Titanic sink in slow motion...right before our eyes.
  • C - I must agree with you.

    For years, I thought I would have surgery. I kept looking into it, but I did not understand how it might impact me negatively, until I went after medical research and case studies, covering the entire gambit of surgeries. After a time - I realized that I had been saved from a fate, because I probably would have had a failed back syndrome.

    With the SCS - I was made aware of it, and did check it out as a therapy. I have severe sten. DDD. since I was 20 or so. Pain = discomfort = has been my partner for almost 30 years now. And even with that, instead of popping around from idea to idea, I have kept working on myself, to find the best things that help.

    I have looked at SCS and I see it as another tool, in the box. But I also took my surgeons advice, when asked about this. His comment was that he would rather leave that option, until later, when things that we are using now - do not work. I see no need to keep pushing his limits, on my care, or disregarding his advice, just because I think it might be better. He has the experience to let me know what he thinks will work. I still trust his judgment, just as he trusts mine, to be honest about how I am doing and what I really need to get "feeling better".

    And that has been my motto - I keep using what works, I do everything I am suppose to and I keep researching new ways to modify the discomfort. The mind is a powerful computer and it can be reprogrammed.

    In the end - with a long term attitude - I would rather have a few more things to try, as time goes by, than use them all up and be sitting there in a pity party wondering - "why did it not work for me"
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  • Thanks for the replies so far. It is nice to get the views of others on a subject like this. I was recently contacted by the manufacturing company of my SCS to help explain to the state government how effective spinal cord stimulation is and that it is not some eccentric treatment that really has no impact on a person's ability to function.

    I went from being unable to walk more than a few feet, to being a very functional individual once again. I shudder to think what would happen were I to lose support for my SCS therapy. My only other "option" right now is an experimental surgery to graft muscle and nerves to my head and neck by going through my jaw. Doesn't give me much of a warm fuzzy and doesn't even come with a moderate chance of success and does come with a chance that it could make things worse.

    When I read and experience personally how "department store" spinal cord stimulation has become in certain areas, it really upsets me. My first experience with Pain Management in my new home was like walking into a department store with product displays everywhere. Without even addressing my referral, this PM doc wanted to implant a second SCS. He wouldn't even listen to the fact that the medications do a decent job of keeping my legs fairly comfortable.

    Reading on-line about how "en-vogue" having an SCS seems to have become, just upsets me. These people are messing around with the future of the only therapy option I have left and one that is doing wonders for me.

    Thanks again for the replies!

    "C"
  • Howdy C!

    When they told me I had Neuropathy in my right arm, and more importantly both legs, my NS "mentioned" the SCS. He told me "we aren't there yet", but if they can't figure out what is causing your Neuropathy, that might be the route - but that is *after* all other options are exhausted. That's why on here I saw many with Neuropathy issues getting them - freaked me out, hell, it still does, and I don't freak easily!!

    Since I know there are issues in my back that match were the leg Neuropathy is, same for my neck - I won't be accepting that option for a long time. I think there are still interventions that can be done on me. So I guess the long and the short of this thread in Miami? SCS is still looked at as the last option...when nothing else has worked. I think that is good, right?

    Brenda
    PCTF C4 - T2, Laminectomies C5, C6 & C7. Severe Palsy left arm/hand.
  • I had no idea the SCS cost that much.
    When i seen my PM last week, he told me he was concerned about the amount of norco i was taking as it could evenuatally mess up the kidney's.
    So he asked me what i thought about getting the SCS, i told him i would need to discuss it with my NS, so he said he would talk with my NS before i see the NS on 11/10,
    The PM answers to my NS so nothing get's done without him approving it. Whom i completely trust.
    But with work comp. paying the bills, i cant see any way they would approve those kind of additional costs.
    But for the patient it sounds like something to consider, rather then being dependent on mind fogging med's the rest of your life.
    The CD he gave me to watch, show's the mfg. is Medtronic.
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  • I want to follow this thread VERY closely. I was told that sometime down the road we would be looking into this for me. Right now it scares the Jabez's out of me to even think of it lol ;)

    I am rather confused haglandc

    "As patients we ourselves are somewhat to blame for this because we are driving the numbers through the roof in regards to trial stimulator and permanent implant failures. In a desire to find relief from relentless chronic pain, patients are seeking out spinal cord stimulation versus seeking out other conventional or traditional treatments and possible surgical interventions. Some are even seeking it out, because it appears to be the "latest and greatest" pain management device."

    I would think most people would be lining up to get this if it would remove the insane world we live in called chronic pain... ??

    I am sure I am not understanding something correct here. Please explain to me - a lay person ( ie. ignorant lol )

    Here is what I understand - the gov thinks the SCS is being over used/abused and wants to limit it.
    People have jumped on the SCS band wagon BEFORE trying different options to handle there pain - hence why you posted what I copied in "quotes" above.

    AM I close ? lol ;)
    L1 - S2 "gone" useless in 1 way or another. DDD. RA. Bone Spurs. Tons of nerve damage/issues. Stenosis. Both knees replaced. 50 yrs old. I had a great fall (hence my user name) at age 41 and it has been a domino effect every since.
  • More and more it appears that patients who hear of spinal cord stimulation want to try it before trying less invasive, less risky medications and conventional therapies.

    The insanity of chronic pain is just that ... insane! It drives people to make decisions that they generally tend to regret later on in life.

    If I could live my life without spinal cord stimulation, I would in the blink of an eye. If I had tried using it before I tried everything else, I would not be as pleased with the results as I am today. It's not a perfect treatment, but my definition of perfect has been redefined by going through all I did prior to SCS therapy.

    Some doctors are genuinely recommending them to patients who have exhausted all other viable options. Some doctors are recommending them to anyone they feel they can convince to try one. Not in the true interest of the patient, but in the interest of gaining more experience and gaining more income. So many patients are being duped into thinking it is better to go with an SCS sooner rather than later.

    Because of this, many are rushed through trials and while still confused as to the trial results, are convinced to proceed with a permanent implant. It's not long before they feel the unit is ineffective, their rep is a horrible programmer or some other reason that the SCS does not work. So after the huge expense of the implant, now they have to have it removed at a great cost as well.

    Many folks are convinced that an SCS will allow them to get off of most if not all pain medications. Well that is not normally the case. So the excuse of "I don't want the fog of the drugs" doesn't hold much hope, since they still wind up taking the meds anyway.

    All of this and more lends itself to horrible numbers when tracking the success or failure of SCS therapy. A good numbers cruncher for the government can make it look as if it is a huge waste of government money. As in some states right now, they are trying to take the option of SCS away for Medicaid and Workman's Comp.

    So in our enthusiasm to get relief from chronic pain, we have begun to shoot ourselves in the foot. By continuing this pattern of haphazardly going about patient selection for spinal cord stimulation, the numbers are getting skewed. Those looking to save money so it can be used elsewhere are chomping at the bit to get their fingers into the "dough" being used for spinal cord stimulation.

    I hope this makes sense. It's not as easy to elaborate on as other topics.

    "C"
  • I always thought it kind of odd when reading the posts here about people doing the trials. Am I correct in thinking it's only a couple of days? I wouldn't think that would be long enough to do a complete trial with valid results. It would take about two days just to get used to it, and then play with the different settings to find the right levels. I've read about a few people here, who's trials were fantastic, but once they had in implanted permanently it turned out to be a disaster for them. Would not longer trials also benefit in decreasing the numbers of "failed" SCS, once the patients have been properly screened for it originally?
    Kelly
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
  • One thing that all docs have to contend with is that trial leads are required to be pulled after 10 days. The risk of infection is very high and if a person hasn't made up their mind by then, another few days won't (in my opinion) make any difference.

    From all the different groups and people I have talked too in regards to SCS therapy as well as the doc and a couple of reps, those who benefit the most from SCS therapy pretty much know within the first hour of their trial that the therapy will work. There is a placebo effect that some fall victim too and it seems the longer the trial the more confused they get.

    During my trial, I knew the instant that the trial unit was switched on, that it would provide me with relief. Even more so, I really knew it the first time it was switched off!

    Drats, I am exhausted and my words are starting to jumble. Will have to address tomorrow

    "C"
  • Thanks for explaining!! You've certainly given people a lot to think about when/before discussing this with their doctors.
    Kelly
    APROUD CANADIANveteranButNOTa doctor, my thoughts are my own
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