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Having a Bad day!



  • I feel really down when it is like this. I have been so darn good, patient etc and then right now, I wonder why I bothered having surgery at all?

    OK, so really the pains have changed now and I am sure this is all linked to my nerve issues.

    I wish I could switch them off. Its been 3 days now and no let up.
    I want to click it, hit it and scold it, all at once. Crazy huh!

    I wonder about the SCS...How long do they make you wait b4 considering you for it?

    Oh for relief.... :''(
    Thanks for all your support - it is SO needed right now. I could howl for us all!!

  • unfortunately, no advice as to relieving the pain, but I do hope that you can get your pain level down quickly
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  • For me, it was never mentioned until I had my EMG that the docs were like "Oh, wow - Ack! You need an SCS". I was in full on denial at that point, so decided to wait.

    Then we moved and the new doc, even with my previous ns's referral, refused to do the SCS until I jumped through all his rules and regs. And I had to another 6 months of conservative treatment per his rules. And finally, I got my trial at the end of November and my permanent last Monday the 5th. But I felt like I had to beg and beg and it was almost the last thing this new doc wanted to do. (The more I brought it up, the bigger stink eye I got, but I kept saying "Do I need to go back to my former state and former doctor to get this treatment? Because I will. I've called, they'll do it, my insurance will pay for it." Once I made that really clear, the ball starting moving a little faster, I'll admit. These docs just make so much money on injections and such, even when you arne't an ideal candidate, that they seem to want to suck every last penny out of your insurance because once you get the SCS (which is no cheap procedure), you might go off and be happy, never needing so many appointments again, etc. No more "Cha ching".

    However, others I have talked to (quite angrily, in fact) said their docs pushed the SCS on them, even when they didn't want it. As if, do this OR leave my practice. And some of them had more back pain than anything else, which really isn't ideal for the SCS. (Radiating nerve pain is).

    So I don't know if it is regional thing, or not, but I wish I had lived where it was "easier" to get! I get angry sometimes because I don't know why doctors hold the power over our pain so tightly in their hands. Like making me do all the shots and everything over again when I had CLEAR test results, another doctor's opinion, had even already had a thoracic MRI in preparation for paddle leads to bring over here, and this doc, after finally agreeing to the SCS, refused to try the paddle leads until he had to. And my procedure was a nightmare and proved I need paddle leads, just like my former doc knew without ever going through any nightmare procedures. (He figured with 3 surgeries in 12 months, there would be a ton of scar tissue - Duh.)

    So now I have percutaneous leads that are working as we speak, but they already moved once and I feel they may have moved again. *I can tell by how much power I am having to use the get the same results as a week ago, where I feel the buzzing, which is a bit lower but still covering my pain area). If they keep moving, they will move out of position. At that point, I guess he will put in paddle leads. I haven't done a thing to move them, but if my back is messed up, has some anomaly, that could be causing a less than ideal percutaneous situation. Depending on what the doctor thinks, he may decide to go back in and do paddle leads. Only good news to that is I already have the tunneling wires and my implanted generator in my hip. Healing shouldn't be as bad overall as if I had them all done at once. (Paddle leads are sewn in place and don't move, but getting them is a much more major procedure than the simple percutaneous leads procedure because the doc has to do a laminectomy, which removes bone.) This doctor gives almost all cervical SCS patients paddle leads because there is such extreme movement at the neck area.

    And my doc is considered the grandfather of SCS, it's just that he is so stuck in his ways and if you have an opinion, even another renowned surgeon's opinion, you really hurt yourself in the long run. Dumb and stupid seem to work better. lol

    Anyway, I would ask your doctor about the full testing for permanent nerve damage (EMG, etc.) and then what happens after that. I found in our new metropolitan area, there are only 3 doctors who even do SCS, so that might be your problem - if your doc doesn't do them, he might try everything else first forever and ever.

    I'm so sorry you are down - it sometimes took me weeks to get over a nerve flare like you have and then just as I was feeling better, I'd do something else. Tears tears tears, let me tell you. My recliner has become my best friend, sadly. lol

    Many gentle ( (HUGS) )

  • Thanks Cherish. One needs something to grasp when I have been through SUCH an u/down rollercoaster, will the surgery work, yes....no ...maybe...damn another operation needed...this one....and so on.

    I will push for the nerve tests.
    I suspect my surgeon may be feeling a bit vunerable as he missed the complications (unless he intended to leave it, but that doesn't make sense either)that have left me here.

    I do have absolute faith in him but do worry, naturally.
    I am 3 and half months post revision and yes, not suffering madness and insanity on a daily basis in pain BUT am still trouble beyond a reasonable level and still very incapacitated by the current goings on. ~X(

    I am waiting to hear if my local area has agreed my taking Lyrica. Like you, we have policies and loop holes to jump through, all depends where you live.

    My thinking is that the surgeon will be very reltant to admit any "permanent" nerve damage. It takes it all to a different place when the "hope" element is removed.

    Still, It is good to know that my options are not exhausted, yet!

    I am only in my 30's - got way lots more life in me yet to be left here!
    Thank you friends.
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