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Back from SCS trial



  • All in all the permanent was less painful than the trial. No tape to deal with. If staple removal is something that un-nerves you...I can attest that they can use dissolvable stitches. That is how they did mine. I think the worst pain was the day of surgery after that it was just needing help to do things I shouldn't do. I think for two days I needed help in and out of bed because I was afraid of twisting and causing problems...once I got rid of the fear...everything was fine. More mentally getting yourself ready. Like I said I am 42 and if some think that is too young...they should walk a day in my life without SCS and they would make the same decision I did. I think I aged with all the pain and was acting like a little old woman afraid to do this and that...with SCS I have regained my youth and I am very much a part of my kids lives. Whoever did the reseach for this device on chronic pain....I for one thank you.
  • So glad you had a good trial and are moving forward. I've been out of town and missed this post, or I would have posted sooner.

    I LOVE to tell people about my SCS and have no qualms programming it in front of others. The total transformation of the "pain Cheri" to the "SCS Cheri" has been dramatic and everyone is curious what is responsible!! People are fascinated and so encouraging. I'm not embarrassed or shy in the least, in general, and feel like a spokesperson almost. lol I could definitely do a commercial if there ever was one.

    As for how it changes your life - for me, it's been minimal. I already wasn't bending, lifting or twisting, and was already very careful. I carry my remote in my purse every place I go, as it is my best friend. lol

    And as for stimulation in the groin area, I have that when I want to increase certain settings, but I use it during intimacy for quite a little party, if I may say so!!! A total bonus, indeed.

    I have some bowel numbness and my bladder is entirely flaccid (not dead, but not working) and no one knows if it is my SCS or the nerve damage that led to the SCS. There is no way I am going to turn off the SCS to determine this. Least of my problems! That is how much the SCS has changed my life!

    I am also a young 42 and was aging 5 years a minute with my 24 hour nerve pain. This has been a God send in my life. Entirely.

    I hope you find the relief I have and go on to have a fabulous life. There's only up from here!!

    Take care,

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  • Yep, that's the sensation!!
  • I will admit I found out about the bonus groin stimulation in a very strange way. I am a single mother and haven't thought about intimacy due to pain. I was being programmed a couple of weeks back when the rep asked, "where do you feel that now". Well I didn't feel anything so she kept turning it up. Finally I started breathing heavy and she asked again where do you feel that. I couldn't answer...and she knew exactly what was going on. She said she would save that for me for when I find Mr. Right. After that I saw a video where they are using SCS for women with dysfunction in that area. Think they called it their special button. LOL
  • I was reading an entry from another forum today and it made me think of you. The person had an SCS implanted a little over two years ago for nerve pain in their legs. Recently, they developed back pain which prompted their surgeon to remove their hardware from their fusion years earlier. Low and behold, the hardware removal fixed not only their back pain but also their leg pain. They had the SCS removed this fall cause it was no longer needed.

    I was wondering if anyone ever considered you hardware as a possible contributing factor to your pain?

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  • No one has suggested that the hardware may contribute to my pain. At about 6 months out my neurosurgeon sent me to my PM Dr. for the SCS. My neurosurgeon had done x-rays, MRI, and an EMG and he said that everything looked at it was supposed to look prior to making the referral. Even with the referral for the SCS my PM Dr. did a couple of injections, nerve block, and radiofrequency ablation prior to recommending the SCS.

    While it is always a possibility, I really don't think the hardware is the issue because the pain in my legs hasn't changed, except for more pain on top of my right thigh. The pain in my back has actually lessened slightly since the fusion because prior to the fusion the back pain was equal on both sides and after the fusion there are times where my left side isn't as bad as it used to be but the right side is the same. Also, I have more pain on the right side which really puzzled my neurosurgeon because he did the fusion work on my left side which also led him to believe that anything related to the fusion wasn't the cause of the pain.

    I do appreciate to you asking about it. How are things progressing with you?

    My surgery is set for October 29. I don't know about you, but since the trial was taken out my pain level has been high and my pain meds aren't helping very well. I am definately ready to get the permanent implant.
  • Sorry they don't think its the hardware. I had mine removed last year. It did fix my right foot drop and corrected some of my back pain. I have my screws and rods sitting on my desk at work and I can definitely see how it could cause some problems.

    Things are progressing very slowly here. Thanks to Medicare, most of the Hospitals in my area will not implant an SCS. I don't have Medicare but their payment policies have screwed it up for everyone. I have to go to a neighboring state to have it done. I'm using the recommended Doctor that my PM partners with in this instance. According to the Medtronic Rep, he's the best in this area at implanting an SCS. Problem is, very hard to get an appointment. I did get lucky and got an appointment today due to a cancellation.

    I too have been experiencing increased discomfort since they removed the Trial. My thoughts are that its not that you have more pain but your perception has changed. It took a long time for pain levels to build up. Then everything drops and you get reset for a bit, thennnnnnn its gone and you return to your normal levels in a matter of hours not months or years.

    Hope it gets better soon.

  • Dave, I agree that Medicare pays less than the going rate. Not just for SCS implant, but for everything. It is embarrassing.

    I do not have a problem with finding a local pain doctor or a local hospital that will perform the SCS implant for Medicare patients, but I don't trust the local doctors and hospitals to do it right. So while this (Julie's) thread was unfolding, I was traveling 150 miles by train (since pain prevents me from driving) to one of the best hospitals in the region to arrange for my SCS trial.

    After my first visit to my Pain Center earlier this year, the hospital billed my insurance company $878. Medicare allowed $77. Neither the hospital nor anyone at the Pain Center said anything about the bill. However, I was so embarrassed that I called Medicare to complain. I told the Medicare agent that two doctors at the Pain Center had spent more than an hour with me on an initial visit. How could Medicare allow only $77? The agent sounded somewhat sympathetic, but she said the only thing I could do would be to file an appeal with Medicare. I have gotten into so many hassles with Medicare before. They over billed me for my premiums and then took many months to review their calculations at three different sites in three different states and finally gave me $65 refund. I don't want to go through the hassle of another appeal.

    Julie, I know this thread is about your trial experience, but since you have revealed that you work for Medicare, perhaps you could advise me how to deal with the Medicare bureaucracy.

    According to the web site of one of the manufacturers (I suppose I may not give the URL here), Medicare 2009 allowed charges are:

    $8412 for implantation of two percutaneous leads;
    $15567 for implantation of spinal neurostimulator;
    $109 for electronic analysis of spinal neurostimulator (first hour)

    Hardware charges are higher, but the Medicare allowed charges were not given. I suppose they are higher for Boston Scientific than for St. Jude.

    Does anyone know whether these are the actual Medicare allowed doctor charges?

    If they are correct, then maybe the low initial allowed charges may be offset by the implantation allowed charges.

  • I actually solely work on Medicare Part D and Medicare Advantage (Part C) so I really don't know much about Medicare Part A and B rates. I can try to do a little research this weekend on it. But, the biggest thing I would say to do is if you are not happy with your Medicare rates you should write your Congressmen. The biggest problem is that Medicare and Medicaid have become such a huge (and growing) portion of our Federal budget that there have to be some measures to control expenditures. This is one of the reasons that health reform is needed. (But please, I don't want to go there. With trying to keep up with work and my back pain I haven't paid attention to the health reform debate.)

    I do know that if you are in a Medicare Advantage plan (Part C) and if a plan can't provide a service within a reasonable distance in network a beneficiary can request an exception to go to an out of network provider for coverage of the service.
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