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Started my trial today

JulieAJJulieA Posts: 1,420
edited 06/11/2012 - 9:02 AM in Spinal Cord Stimulation
Things are going pretty well. After screaming through the lead implanting OMG that was horrible.... I can say with out a doubt that the SCS is working wonderfully cutting down my arm pain. The jury is still out on the upper back pain ( everything is so tender and still numbed up). I go back tomorrow for additional programing. I am getting coverage from my arm pits all the way into my feet if you can believe it. The programer has it turned to focus on my arms and upper back. It feels pretty good, but i am sore. I have leads just below my neck hard ware above my thoracic I think. It felt like he kept putting them in but I know he could only put in 3 leads.

I am so grateful that something stopped my worsening arm pain you have no idea what a relief it is. :)

I will keep this updated.



  • ...you are getting relief. Yes, the procedure is an "un-fun" experience, but hopefully it will prove to be worth going through that procedure...I still hear the words "ok, a little pressure here...", only to feel more than "a little pressure"...it's like telling a lobster "ok, a little warmth here"...

    Anyway, that's great you are getting some additional programming done...sounds like they did a pretty good job providing coverage!

    Best of luck and keep us posted on your progress!!
  • She decided not to touch my programing. We are going to leave it alone. I am noticing some headaches with program 1.

    They decided to change my bandages. Good thing they covered my entire back with tagaderm (I'm allergic to adhesives) it was already blistering. It's okay for like 30 minutes but it has to come off quick. Omg more screaming as bad as getting my tattoo maybe worse.

    So they used adhesives I'm allergic to and antibiotics that I'm allergic too. I don't think any one read my chart or hand band.

    The soreness feels a little better today. I need to run a couple errands again. Trying to figure out how to wash my hair with out getting my back wet :)


  • Wow my procedure went so well I didn't scream, cry flinch, as a matter of fact I was joking with the nurses and the rep after the doc was done. As for the aftermath well for me the tape was the worse thing made me itch so bad and of course as u know u can't remove the tape so had to deal with it for like 7 days. I am sorry the pain was so bad u screamed but I hope u find out that it is well worth the discomfort. What the docs have told me must so be true, they said cuz of the all the nerve damage to the c5c6c7 area that I have almost no feeling back there. I am in away glad of this reading everyones experience has made me realize that being numb back there permanently is a good thing for procedures like this. I so hope u get the relief u want and deserve. Keep us informed and if u ever want to talk about the SCS or anything else feel free to PM me or come into chat sometime if I am in there. >:D<
  • When it comes to the tape, as I am highly allergic to adhesives. As most know, they tape you like tape is going out of style when you have the trial. And I had my trial for 7 days! When they went to remove it, I had blistered so badly, they had to remove it at an incredibly slow pace, and it was so painful I cried the whole time. See, I break out within ten minutes, and by day three I wanted to scratch my back with the cactus in our yard, or a chainsaw, whichever I could get my hands on! My poor family was so sick and tired of having to scratch me but I couldn't help it. I was a mess! I told them I wouldn't go through with the permanent one if I had to deal with tape again. They promised I wouldn't, and when I got home from the surgery, I realized they stuck two gigantic tegaderm patches on me! There were the biggest I had ever seen, and I am still P.O.'d about it. I took them off the next day. I refused to end up the same bloody, pulpy mess I had been before. I am just as allergic to the tegaderm as I am regular adhesive.

    My trial lead implantation was so traumatic, I told them they better make sure I don't remember the implantation for the permanent one. And to my relief, I have zero memory of it! I am however concerned that they don't seem to be listening to you or reading your chart! They placed a band on my wrist that said allergy and I felt like a zillion people asked me what my allergy was the day of my perm surgery. I'm glad they were paying attention, but they are clearly not doing that for you. Have you talked to them about your concerns?

    Keep us updated!
  • That makes sense. The doctor had to slide the leads over my worse area- all of my herniated and swollen and torn thoracic disc I can not have any one touch it let alone massage it. It's probably what hurt so much.

    Sorry that you have the same problem I have. Not fun. I noticed there was a small tagaderm where my leads are coming out that the nurses were afraid to touch I will ne sure to place lidocane patch around it before I go back.

    I have a question for you guys. Does the permanent lead have a wire that will run down my spine like this or will it come out at the lami site? I think the leads wires are irritating my thoracic area a little, I will talk to my rep tomorrow.

    The rep was talking with my NS and pm today I wonder how long I am going to have to wait for the real deal?

    Thanks for the support :)

  • Well it took two months for my insurance to approve my perm Stim, which is exactly how long my rep said it usually takes. I thought she was crazy because it took 5 months of fighting back and forth with my insurance to get the wheelchair I desperately needed! To everyone's surprise, it got approved in two. I had it placed a month after the approval because that was the earliest my doctor's schedule would allow. I would ask your rep how long they think it will take because it's something they deal with all the time, they seem to have a better idea with approximations. However it works out, I hope you not only get the pain control you're looking for, but that the perm gets scheduled so fast you're shocked.

    Take care!
  • I was lucky, I guess in that my trial date was 10 Apr and my Perm was 14 May, so I was not required to wait very long. That said, I had to jump through some hoops to make it happen that quick. If I hadn't taken the initiative to keep in close contact w/ my nurse case manager at the Navy hospital (who was AMAZING, BTW), it would never have been approved that quickly. Not sure if you have some sort of advocate that can run things to ground for you, but trust me, when the trial is over (if as successful as it was for me) you will want the perm implanted ASAP. It's funny, people talk about getting their "fix" with drugs; I wanted my "fix" from my stim, lol! I actually cannot wait until I can leave mine on for more than a few minutes without it causing more pain at the "lami" site (is that the right term for you all w/ back issues...I've seen it used and is better than typing out laminectomy all the time. :D
  • I told my doctor it was cruel to show me I can experience less pain, then to take it away from me! I truly experienced a profound sense of loss when the trial was removed. It resulted in very strong emotions and I ended up feeling depressed and angry! So to combat my feelings, I threw myself into my work and kept as busy as possible. When they called and I still had to wait that last month due to surgery scheduling, the depression/anger changed to anxious and scared out of my dang mind! :)

    Sure wish you could leave it on too. I won't turn mine off, I even sleep with it on. Good news for me by the way...I go in on Monday to have the AdaptiveStim turned on and programmed. Sooooooo excited!!!
  • I was fortunate in that I had my trial leads pulled and the next day had the perm implant done. Navy medicine sped it up for me since I had flown in from Okinawa to Bethesda, Md. and they wanted me to hang around a few weeks before I flew home.

  • Wow, to go straight from trial to perm is awesome!! They did yours at Nav Hosp in Bethesda? I was actually surprised that I did not have an option to have mine done here in P-Cola, considering it's a major medical facility, but alas, had mine done out in town.
  • Yup that's the place. My home away from home. Spent the better part of a year there between 05 and 09. Have the utmost respect for the folks who work there, they took really great care of me!

    I didn't realize how lucky I had been until afterward when I heard of so many who have to wait between trial and permanent. And I complained about having to deal with the pain from the afternoon until the following morning! Sheesh was I an idiot then!

  • I wanted to tell you guys they considered me almost a 100 percent relief on my arm nerve pain (t 4 relief) from the trial. As soon as they pulled the leads the nerve pain came rushing back. I still have a head ache so I can't blame the SCS for it any more.

    I am waiting for the approval for the perm implant.


  • That's incredible news! I'm so very happy for you that you experienced such a great deal of relief. I'm sorry about your headache though, hopefully that resolves soon. Keep us updated on your approval and eventual implant! Take care.

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