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SCS Implant fear

kcrozkkcroz Posts: 33
edited 06/11/2012 - 7:25 AM in Pain Management
Finally after having the trial during Labor Day, I have an appointment with a N/S regarding a cervical permanent implant on 12/08. It has been so long since my trial and I have read so many stories...bottom line I have fear now. I have spent countless hours googling anything I can find regarding Cervical SCS. I don't want to be in any more pain than I already am. Stories of lead migrations, wound infections - Even "C" who considers hers a success has problems with irritation at the implant site after 5.5 months. Maybe the doctor can help with my fears. The P/M who did the trial was worthless.



  • You have to remember that nothing is perfect and an SCS does not come without its own limitations and issues. I don't consider the irritation to be anything more than a sign that my SCS has allowed me to be so active that I irritated it. A little celebrex and tylenol and it calms down in no time.

    You are doing what I nearly did. I nearly talked myself out of having the permanent implant done. 3 things convinced me not to back out.

    ...The pain relief it provided
    ...The fact that my husband said I was the "me" I used to be
    ...My dear friend telling me she could tell simply in my voice

    I was still uncertain but went ahead anyway and as soon as I was "turned on" I knew it was the right choice.

    Healing from the surgery of an SCS implant isn't that bad. Since the horrendous pain is being controlled by the SCS, you will feel all the little aches and pain you wouldn't normally, but it's easy to dismiss them.

    An SCS can allow many people to become very active again. I think the designers are not quite caught up with just how active a CP patient can become when they feel better using an SCS. So they haven't quite perfected everything. Give them time, after all, that's what they are giving you.

  • Speaking of fear---fear this: feeling the way you do now forever and ever and ever with no hope of any relief. Now that's scary. I know Shannon's post sounded really bad but now you know some other questions to ask. Write them down. Everything negative or problematic you've read on the internet, write down. Bring all of these questions to your apppointment. (Be sure to do much ego-stroking with the neurosurgeon as you don't want him (or her) to feel you are challenging them or doubting the fact that they are God's gift.) Ask the doc how many of these he's done (he should be used to this question). Ask if any of these problems you are concerned about have arisen after his surgeries, how many and how did he handle them. Find out if your insurance will let you spend the night in the hospital. But geez, girl...look at what you've already been through. How bad could this be? You can deal with it. You are tough. You are strong. You have endured chronic pain for a long time. You are invincible. (Do I sound like Helen Reddy?) Post your impression of the NS on this thread. I remember how scared I was going for my fusion surgery. I was a surgical virgin with a crappy attitude toward doctors--I didn't trust them. I was frankly surprised when I found myself alive and awake in the recovery room and finally experiencing a true #10 pain level. I'm a financial advisor. We are always making decisions that don't come with guarantees. We talk about risk vs. reward. Is the amount of risk you're taking suitable for the potential reward. (You know I'm following in your footsteps. I'm reading the same stuff as you and I'm complaining that I have to wait so long to have my pain relieved.) I think you're just having some wedding day jitters. What if you didn't do it? Then what? The rest of your life in horrible pain? Do it. You're tough. You're strong. Let us know how it goes. If you're not up to it, have someone post on your behalf. Most of us spend more time talking about things that go wrong and less time about things that go right. Its only human nature. I do it, you do it, we all do it. I wish there were not a ban on addresses, so I could send you flowers or balloons. Do it. This stimulator offers you the potential of significant pain relief. It may be unpleasant for a few weeks. Talk to your doctor about how you guys are going to deal with that, If, in the end, it really proves to have been a bad decision, you can have it removed. Do it.

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  • I understand. I think that is common. I just got approved for the trial, which will be in 3 weeks, so I'm not there yet. But with anything involving surgery, I think there would be a moment of fear. It would be strange not to fear a little bit.

    I don't know if the cervical SCS is significantly different than the lumbar SCS, but I have heard enough positive that I am very hopeful. My doctor is extremely confident that this will give me some of my life back. While not a cure, I am excited to try the "best" choice I have right now.

    It's been so long since your trial - did you experience significant relief? If so, has that dulled in your mind? What encourages is me is that I have read that people who had the trial and had pain relief almost can't wait to get the final implant. Once they have experienced the level of relief they get, they want it right away.

    Hopefully, I will have a positive story to tell. But I won't regret trying, I know that. Where I am now, I really have to try what might give me relief.

    Definitely follow your gut, but try not to let fear make the decision. ( (HUGS ) )
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