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Back from SCS trial

anjuanaanjuan Posts: 236
edited 06/11/2012 - 8:37 AM in Pain Management
I just got back from my SCS trial insert and thought I would share my experience while it was still fresh in my mind. I hope this helps others who are considering the trial. I am going to put a lot of details, so I hope it isn't too much for some of you.

I was scheduled first thing at 8 am. They got me hooked up to the IV, met the Boston Scientific rep, and the procedure was not actually started until around 10 am. At the time they gave me meds to relax me, but I wasn't knocked out. They started taking pictures of my spine, and my Dr. started placing the leads. They turned on the SCS and the stimulation was in the front of my legs instead of the back of my legs. I started hearing the Dr. saying things like, "Amazing, look at that" to the rest of the staff. To make a long story short at the end of the procedure which took 1.5 hours he told me that my anatomy was different and the nerves that are usually for the back of the legs where where the front nerves usually are and vice verse. So they were twisted. My Dr. had to map my nerves during the procedure and ended up having to twist one lead over the other. Lets just say that the procedure was painful and there were times where my legs were shocked and literally jumped off the table. During this the rep kept asking me where I was feeling the stimulation and the Dr. would adjust accordingly until they got things how they wanted.

They then taped everything up and put a soft corset around my midsection (I didn't know I was getting a corset). Then the rep took over and started working with me in my room to create 4 programs for me. Unfortunately, I got up and went to the bathroom and when I came back the programs felt totally different and I just felt them in the front of my left leg. My programmer was so awesome. She got her computer back out and had to totally create 4 new programs. She doesn't think the leads moved, but she wasn't sure what happened. She was glad that I spoke up and was happy to take the additional time with me. She is going to call me tonight to see how things are going and we are tentatively planning to meet up tomorrow to further adjust the programs. I just can't say enough positive things about how sweet and patient she was with me.

As far as the stimulation, it really does feel like an internal TENS unit to me. Right now it isn't going up as far on my back as I would like, but I am hopeful that we can continue to work on things. I am getting good coverage in the back of my legs. The thing is really very positional. I have already found out the hard way that I have to turn it down before laying down because it can get really strong. I do have pain in my back area from the incisicion and a pain med for it, but overall I am doing fine. The procedure itself was really painful and wore me out. I was crying at the end of it. But I hope this doesn't scare anyone away since this was because of my unique anatomy. My Dr. and everyone was really sympathetic and I am still happy that I decided to do the trial.

Sorry for the book. If anyone has any questions I would be happy to answer them.

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Comments

  • I am glad that you had a good experience with the rep. It is great that you gave everyone the details of your trial. I know a lot of people who are considering a trial will benefit from your post. I hope you get a good amount of relief in the next few days. It sounds like the stimulation is helping you. Keep us posted.

    Melissa
  • Welcome to the world of invisible stimulation. Where you think that everyone can see the pulsation of the SCS, yet no one can. Unless of course you have a cat ...

    Good luck with your trial. Try to not just lay around during this time. You need to find out if the SCS can deal with your every day pain.

    One thing that I found helpful during the trial, was that after the first day or two, shut it off in the middle of the day for at least and hour or two. It will show you really quick, just how much you are or are not benefiting from it.

    "C"
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  • Hopefully you are on your way to getting a life back.

    I also found out the hard way about laying down with my stimulator on!! I swear the top of my head was blown ten feet in the air!! Even in the best of times I can't get up very fast so it was a struggle for me to get back on my feet!! Every part of my body was in a spasm.... even my ears!!

    Good luck on your trial.
    Cheers
    Patsy W :H
  • Thanks for all of your comments and support. I had a rough night. It was difficult sleeping because of the incision pain. I finally gave up at 4am. This corset is also driving me nuts. I was thinking about going into work today, but there is no way that I could handle my long commute, etc today. So, thankfully I am able to work from home today.

    C, there is no chance of me laying low during the trial. Tomorrow is my 5yr old's b-day party and my family is coming into town tonight. :) Thankfully it is my mom so she can help out, and we are having the party at a place that does everything for you.

    I really think that the stimulator is helping some. I am trying to go longer without using my meds. I will also be meeting up with my programmer today to tweek things some more.

    Thanks again for your support!

  • I would not worry about taking your meds. If the meds help lessen the pain, use them. My doctor told me from the beginning that I would probably still need medication. He was right. I think for many of us with the SCS it is a combination of things that help us. I use meds, the SCS, heat, nerve ablation and nerve blocks. Sorry that the corset is bothering you. Can you make it less tight? It will help protect you during the party, so it is a good thing.

    Take care,

    Melissa
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  • I think many doctors do things different. I was told to take my medication through the trial...on the pain meds I was told to take it when I felt pain. He told me not to try to extend the time...but rather see if the time between changed on it's own. I thought this was strange but I was able to stretch my time out. I don't remember how long it was...I had 80% relief. I now have the permanent unit and wonder how I lived without it. Meds are way down, I am happier, my attitude is different, I feel like a changed person.
  • They told me that I could loosen the corset so that has helped that issue some.

    Monib, I like your Dr's explanation of things and when to take the meds. It really makes sense to me.

    I don't know if anyone else will understand this, but I feel like I am learning more about my pain through this trial. I previously thought more of it was from the back, with some leg pain. But now I am thinking that more pain is actually in the legs than I previously thought. Right now I am pretty certain that the stimulation is in the right area, but it is almost like it is highlighting it more while somewhat helping it. Does that make any sense? I am hoping that it can with tweeking it will get even better. My Dr.'s office said that if I need to get with the programer every day during the trial that I should do so.
  • I cried too. I know they had a really hard time getting those leads through the scar tissue. I told the doctor that once she got done with me, she could go to Guantanamo and torture prisioners. She said they would probably throw her into a cell (because she was Indian). In any event, have fun with the party today and put my vote down on the side of taking your usual meds. You want to compare apples to apples after all. Susan
  • So how is the trial going for you today? Are you getting any relief? I sure wish I had the magic potion to sprinkle on all chronic pain suffers. I would heal you all if I could.
  • Thanks for asking how things are going. I am happy to say that the incision pain has gotten better already. Hopefully I can get a good nights sleep tonight.

    I met my programer around lunchtime and she spent another hour with me modifying one of the programs that I liked and created three entirely new ones. Unlike Dave I was getting too much stim in my feet which bothered me when I walked so I had her tone that down for all but one program for when the pain does go to my feet. One of the hardest things to do when she was programing was to try to get the stim in my back without it ending up in my groin area. This was a delicate balance.

    So far I really think that the stim is helping, but I am still couldn't put a percentage on it. Right now I think it is going to end up being over 50% pain relief. I can definately see getting used to it as background noise as some have described. It does feel pleasant to me. I think with my daughter's party tomorrow it will get a good workout.



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