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Need Your Opinion on Failed SCS Trial in Hour 1

JDWJJDW Posts: 2
edited 10/29/2012 - 9:38 AM in Spinal Cord Stimulation

I'm hoping some of you that have experience and knowledge of the SCS trial can give me some feedback on your opinion with my failed SCS trial. Here it is - I've been suffering from chronic pain in my buttocks, thighs and feet since having an epidural steroid injection in 2010. Over the last two years, I've tried everything from all the medications typically used to treat nerve pain along with physical therapy and acupuncture. I've been to Barnes Jewish Hospital and Mayo Clinic in addition to several local doctors. Nobody understands what could have happened that would have caused this chronic condition from an epidural steroid injection. Anyhow, my PM doc recommended SCS for treating my pain. Last week I had the trial performed and had the leads pulled out before I left the building. As I was waiting to have my procedure, the Boston Scientific representative introduced herself to me and my wife and asked if we had any questions. She explained to me that she would be the one to work with me on programming my unit to make sure we had good coverage with the areas of pain in my body. I was rolled into the surgical room and they began prepping me for the procedure. My PM doctor inserted the leads into my spine, the BS rep then told me the leads were in and she was going to start turning on the power to the leads and she wanted feedback from me to where I felt the sensation. Within seconds, I was able to feel the sensation bilaterally in my buttocks and thighs. I informed her of such and she asked me how far down I could feel the treatment and I told her to my knees. After that point I no longer felt anything. I asked her if she could get it down to my feet. She said we would work on it some more when I got into the recovery room. So within 10 minutes, I was rolled in and being rolled out of the surgical room to recovery. Before long, the BS rep came into my room and connected her programming tablet to my leads. As I laid on the gurney, she began the process of trying to get good coverage from my buttocks to my feet. She was having lots of difficulties getting my leads to respond the way she was wanting. Every time she started to turn up the settings, I would begin to have muscle cramps in my mid to upper back muscles. Putting that aside, she had a very difficult time getting coverage equally on both sides in my buttocks and thighs and was not able to get any coverage below my knees. She told me at this point that she was very frustrated with my PM doctor because he disconnected my leads from her computer while in the surgery room. She said that she wanted to make sure she could get good coverage into my feet before leaving the surgical room, but guessed the doctor didn't want to take the additional time for her to do that. After several minutes without success of obtaining coverage in my legs and feet, she asked me to set up on the side of my gurney. After sitting up, she began trying to program my leads again. With every adjustment, she would ask what I felt and I told her I wasn't feeling anything. It was obvious she was perplexed why I wasn't feeling anything. This went on for several minutes where it appeared my leads weren't responding at all to her adjustments. And then all of a sudden it hit me like a bolt of lightning. Without notice it felt like someone had stuck me with 220 volts of electricity. It was awful and extremely painful. I was yelling, "Turn it off, turn it off!" She frantically started trying to turn the volume down and it had no effect on the intensity of shock I was feeling throughout my body. I kept yelling, "Turn it off, turn it off!" Finally she said, "I've turned it off". Yet the shock was still as strong as ever. I yelled it wasn't turned off and then she pulled her cords from my module and then it finally turned off. I about passed out. It was the most awful thing I've ever experienced in my life. I asked her what on earth happened and she said she had no idea. She said that had never happened to her before. She said she kept turning up the volume since I was saying I couldn't feel anything. She stated that something wasn't right and maybe my leads just needed to come out. She said she was going to talk to the doctor. Well, its obvious my PM doctor didn't have much to say and he certainly didn't want the leads to come out because she came back into my room and it was obvious she was very uncomfortable trying to sell me on the idea of just going home and leaving the unit off until the following day and seeing if by chance the unit would work the following day. I told her I wasn't comfortable in doing that since she hadn't been able to get the thing to work right during her many attempts to program my unit and I certainly didn't want to go home and turn the module on and have it do to me what I just experienced with that unbelievable shock. She said she understood. I asked her if she would attempt one more time to program it because if I was going to leave with those leads in my body, I wanted to have the confidence it was going to work. She agreed and proceeded with attempting to program my leads. Unfortunately, every time she attempted to turn it on, my mid to upper back started having spasms. Finally, I just told her I wanted the leads out of my body. She said she understood, but she needed to talk to my doctor again. Within a few minutes, my PM doctor came into the room and asked me, "Why don't you just go home and try turning it on tomorrow?" He said the leads might just need to have some time to "settle" down into place. I asked him why would I do that when she hadn't been able to successfully program my leads and that I certainly didn't want to go through that massive shock experience again. His response was, "Well, its your decision. We'll do whatever you want." My wife asked him why would it be any different at home and that she was scared that it might shock me again. He said that he was hoping that after the leads settled into place that they would work properly. I thought about it and told him that I was sorry, but I wasn't comfortable leaving the leads in my body after what I had just experienced. He said OK and sent his assistant into my room to remove the leads and then we left. Can anyone with experience and knowledge give me any insight to my experience if it was normal or not? It seems to me that I should have been in the surgery room longer and that my PM doctor would want to make sure the unit was providing the proper and adequate coverage it was designed to do. Should I have taken his recommendation to leave the leads in? Am I wrong in that what she was attempting to do was create a program to save in my module that would provide coverage from my buttocks to my feet so that I could use it during my trial? Thanks, I appreciate any opinions on the matter. I'm so discouraged as I saw this as my last hope for pain relief.


  • I would have also insisted on them removing the leads right then and there. It seems to me that the surgeon didn't do his job, by making sure before you left the surgical suite that the leads were in fact in the proper placement for you to get coverage from your hips to your feet during the trial, and while there may be some error on the part of the rep from the company, it seems to me that the bigger fault lie with your PM doctor.
    As I understand the trial, the leads are supposed to be placed in the spinal canal, then checked for placement, tried out to see what type of coverage you are getting, making any adjustments in the surgical suite, then when you are ready to leave, teaching you how to use the unit and change from a couple of different programs stored in the temporary unit so that you can try out a few different settings during the trial. What happened to you is NOT supposed to happen, whether it was the placement of the leads, or a problem with the leads, the surgeon would have found that out in the OR if he had taken the time necessary to make the proper adjustments in the proper suite. It seems to me that he was rushing his way through it...I would not only have had the leads pulled, but I would be seriously searching for a new PM doctor too....
  • RickilalasRRickilalas Posts: 559
    edited 10/30/2012 - 5:41 PM
    I agree with Sandi you need a new PM doc and there is maybe a chance that the rep was Inexperienced also.It does not work for everybody but for it to work the PM doctor,, the rep and the product all have to be good and work to gather.
    I hope you try again and maybe even try another brand of scs

    Good luck
  • I agree with Rick and Sandy as well. That's just crazy. I would look for a new PM, for sure.

    I just had my trial, and it was with Boston Scientific as well. I love my PM and the reps I have are great. The two reps I've met so far have both told me they work as a team. Total, there are four of them. This way I am not stuck with just one rep. Like I said in previous posts, I had one rep at my trial who did the initial programming (and it wasn't great), then I called to have another rep try programming it and he was awesome.

    As mentioned already, it sounds like the problem started with your PM, then the rep may not have been as experienced, so you ended up with a bad experience. If you can find a good PM and maybe have another rep, you could try again and end up having a great experience with the scs trial.

    It sounds awful what you went through, I know I would have been terrified, but don't throw in the towel. I kept trying to talk myself out of getting the trial, and I am so glad I didn't. I loved the trial and am scheduled for the perm implant 12/20. :-)

    If you don't mind me asking, what state do you live in? Maybe someone on SH can recommend a PM doc....

    Take care and keep us posted.
  • JDWJJDW Posts: 2
    edited 10/30/2012 - 9:27 AM
    To Rickilas, sandi and MelW - Thank you so much for taking the time to read my very long post. I can't begin to tell you how much your words and opinions have encouraged me. Since I've never had a SCS trial, I didn't know if what I experienced was proper or not. I figured that asking people who have already gone through a SCS would know and have an opinion. As you all know from first-hand experience, no one knows what it is like to have chronic pain unless you go through it. It's awful and it feels at times it is stealing my life...certainly my quality of life. Anyhow, I was so excited and looking forward to having my SCS trial to see if I could finally get some relief from pain. I was so upset after my experience and knew that I had done the right thing of having them remove my leads. I also felt my PM didn't handle it in the proper way. I was the last case of the day and I just sensed everyone was ready to go home including my PM. It was a nightmare. My wife has said the same thing that all of you have recommended that I get a new PM. I just hope my insurance company will allow another SCS trial in the future. I live in Missouri Mel. Do you know how I would tap into resources on SH to get a recommendation of a good PM? Again, thank you all very much!
  • So sorry you had to experience that. Definitely go find a new Doctor. You should also contact your insurance company and explain the situation. In my opinion, nobody should be paying that bill. For future reference, do not leave the surgical suite until you feel stimulation in the areas where you feel pain. It is true that you can cover other areas with the same lead placement but why fiddle when with a little effort yo can get proper lead placement. For the record, the feet are very difficult to stimulate, especially the tops of the feet.

  • juniebugjjuniebug Posts: 1
    edited 11/02/2012 - 10:27 AM
    I have had 3 lumbar surgeries, and 3 cervical surgeries, with rods and fusion, (64 yrs. old.) Now having SI Joint pain and had a steroid shot there In August. Series of 3 epidurals in the Spring. PM wants me now get a SCS. I am scarred about this, but my quality of life is so poor. I"m really not sure what to expect. The epidurals were horrible. my legs went numb for 3 hrs. and I had terrible headaches, and they did nothing to help me. I would like to hear pro and cons of what it is like to have SCS. The company only gives the pros.
  • I hope this helps someone who has the experience you did. I just had my trial this week. When in the surgical suite, the rep got my left leg and foot, with some trouble, but not the right side. We went to recovery where he worked on my right side and leg. All I felt was terrible cramping in my mid back and nothing in the leg until about an hour later. Even then it was just a tiny tingle on the inside of my thigh. The doctor said that sometimes there is blood or the saline he uses to irrigate the epidural space so the lead slides easier can block the impulse of the lead. They told me to leave it turned off until the next day and then I met again with the rep. Big difference. No more back cramping. Perfect feeling in both legs. After two days I'm ready for the trial to come out and the permanent to come it. I love this, but I was scared at first that it wasn't going to work.
  • RickilalasRRickilalas Posts: 559
    edited 05/10/2013 - 10:15 PM
    Isn't it great when it worked. My trial was for five days Monday thru Friday.
    Friday afternoon I was so ready to call the doctor and say I was to sick to come in and have them remove it but I knew that would be wrong and dangerous o keep it over the weekend.
    This trial is hard to get right sometimes. The doctor really needs to know his stuff and get it in the right place. Then we have to have a good rep that knows how to program the thing.
    I have two that are really good but I have one who is excellent so I try for her.
    The medtronics unit with 16 contacts has some 44 million settings they have to narrow down for your coverage. I do not know what the other company's have.
    Best Of Luck. Plus the implanted one once dialed in is even better

  • RickilalasRRickilalas Posts: 559
    edited 05/10/2013 - 10:29 PM
    The scs unit is a odd feeling its like a vibration feeling but it isn't. Some people feel like your blood was replaced with champagne like the bubbles in it. You get use to it and get to where you don't notice it.
    Its also similar to a IF unit which is stronger then a tens unit but doesn't normally contract the muscles.

    I too had epidural and the very second the meds were placed in my legs went numb. The hospital lied to me and said I was having a reaction to the meds, the rook me to surgery recovery and had a nurse sit with me for six hours never leaving the bed. My new pain Med doctor told me they ( got wet) that's the phrase for placing the meds to deep and into the spinal cord fluid instead of on the dura.
    It was not a fun experience at all. It just hurt me more that they lied to me.
    It was years later before I allowed my new PM to do it and I am very glad he did because he is great with the needle. I have found in a university hospital to ask that only the attending doctor do it just In case.

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