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Is a SCS a good option for un-diagnosed pain?

Hello everyone,
My Girlfriend has been dealing with this mysterious sciatic/sacral pain for 2 years. It is extremely debilitating but no doctor can seem to pin point what the issue is. She has had 7 MIR's, a CT scan and 2 EMG/NCV test. Everything is "normal". Her doctor is pushing for a SCS. We are both pretty uncomfortable with just trying to mask the pain when we have no idea where it is originating from. She has had no injuries and lived a very healthy active life. She is 27 years old.
I posted a detailed history on the sciatic forum. But for this forum my question is...
Would get the SCS without a diagnosis? At what point should she give up searching for an answer and just try to mask the pain?


  • Its a fairly serious surgery. I just had it a few weeks ago and am still recovering. I have failed back surgery, although I am mechanically fixed, the pain never went away. I don't know if I would get one if I wasn't sure what was causing the problem. Has she gotten a second or third opinion? What type of pain meds does she have to take now?
  • Pandqmama,
    I hope you find great relief from your SCS. Currently she is on percocet, 5mgs-6 to 8 times a day. Her drs will not give her anything more. She did try a patch but the side effects from that were too serious. She has not gotten a second opinion because her insurance will not approve one. I find it a bit fishy that her pain management dr is pushing for the SCS but is not willing to try new pain medications. She has to go in every 30 days (for the last 2 years) and explain that she can not get out of bed without the medication. So he agrees to write her a script but only to last her 30 days, not a day over and never any refills.
    I really wish she could get a second opinion but her insurance wont approve it and we sure can not pay out of pocket. Soon enough they will be medically discharging her from the military and she will be left with the VA. I was afraid of this, but now just seeing a new dr would be a nice change. I seriously doubt the VA will approve a SCS though...She has a small window of opportunity to get the SCS now, but she is just not comfortable with it. but then again, we hate to miss the opportunity to get the surgery. sigh.
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  • Hi Laura, What other medications is she on? Does she have something for the nerve pain, like Lyrica, Cymbalta, Nuerontin, or something like that? Usually those meds are good for nerve pain. Also is she on a muscle relaxer - that may help as well? My suggestion would be to get a copy of the test results as well as all of the images and make an appointment with another non-va doctor. I'm sure you'll have to pay out of pocket, but hopefully it won't be too bad as it would be a consultation and they might be able to arrange payments or even a sliding fee based on income and the fact that she's military. I would think that it would be worth it to see if someone else see's something in those tests that the VA doesn't see. I wish you both the best of luck and please let us know how things go.
  • backbback Posts: 190
    edited 04/30/2013 - 7:09 AM
    The reason why her prescription is for 30 days only is because percoset is a controlled substance. Nobody can get a prescription for anything more than 30 days and refills are not allowed.

    As for the SCS, I would not get one if I didn't know the source of the pain. I have had mine for 3 1/2 years now. Mine is only effective on 50% of my pain. I still take a lot of pain medications every day. Another thing that you should know is that once you get an SCS, you're kind of married to you pain management doctor. It's very difficult to change doctors after you have one implanted. I've noticed that some of these pain management doctors view the SCS as a cure all and seem to cut their patients off from pain medications. If she has the implant, she will never be able to have another MRI again unless the unit is removed. Supposedly, an SCS can be removed but it can also scar in a way that would prevent the leads to be removed.

    PainInOhio has some good suggestions on trying other types of prescriptions such as Lyrica, Cymbalta, Neurontin, Savella, Topomax just to name a few. These prescriptions are much more effective on nerve pain than opiates. Hopefully she is not like me, I do not tolerate the prescriptions for nerve pain and am unable to take them.

    I wish you all the best.

    Hope this helps.

  • hi everyone, thanks for your response. She has tried Cymbalta and Topomax both had very weird and scary side effect and did not help pain :( She has also tried pain muscle relaxers that seem to help with her morning pain a bit but not much throughout the day.
    She has seen multiple doctors and had multiple mris and one ct scan. Nothing found. Everyone in the medical community is just throwing up their hands and passing the buck. I feel like every doctor she has seen has given up on finding out the cause.
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  • I guess if your hands are tied, they always do a trial first. They never implant a scs without having at least 50% relief from the trial. At least you would know if it were truly an option or not. The trial is not that invasive, worth a shot.
  • I agree that the SCS is worth a shot. The trial is easy and you will know pretty soon ( within days) if it will work.
    My Dad had melanoma and his insurance company would not pay for the interferon treatment for a year which is about $50,000. We went to the VA they said it wasn't service related but they covered it. The VA in southern CA is fantastic..the VA was also a place where trials were done for both SCS and bone growth stimulators which are now almost standard care.
    Here the VA does do many SCS implants. I do feel the VA has problems in certain areas but not here.

    I do agree knowing what is causing the problem helps but there is not always something they can find. Many times they do a surgery for one thing and when they get in there they find many other issues, for that reason I would try the SCS.
    Meds help but we keep increasing them until your in trouble. All the nerve meds and anti seizure meds had bad side effects for me. They did give some help and are worth trying them all. The only one I can handle that does reduce pain is elavil
    Which is a antidepressant but works on some spine pain.

    Wish I had more for you. My last thought would be find a teaching hospital that is on top of spine repair and even if you have to pay for there opinion it may be worth it. Its best to have copies of all scan and reports. Test are just tools and are not 100% all the time. The SCS will just be a tool to help its not a cure but maybe a key to a better life for both of you.

  • Ms PixieMMs Pixie Posts: 154
    edited 05/04/2013 - 6:19 PM
    Hi Laurahach, welcome to you and the girlfriend!
    I have not read your other posts but has she gotten any injections for her pain? The injections are as much a diagnostic tool as it is treatment from what I understand. My pain clinic has a tier like model of treatment where you start with less invasive modalities and move your way up depending on what works or not. For many years injections helped me for a while in combo with nerve meds, pain narcotics and muscle relaxers. I am due for a stimulator trial now and my pain doc said that the fact that nerve blocks and epidurals have given me relief in the past, is an inportant lead to find out the exact nerve clusters and areas to treat.

    Im with the previous posters on the trial. Since its fairly non-invasive, maybe she will benefit from trying it? Thats how I reason about mine. I wont know the final outcome, but I want to try one. It would mean so much to my quality of life if it gave me some relief.

    Best of luck in the quest finding out what is debilitating her so and I hope she will find relief soon!
    / Victoria
    Cause: car accident & genetics
    Effect: herniations C4-7, stenosis, osteoarthritis, myelopathy, neuropathy
    Non-invasive Treatment: everything under the sun
    Invasive Treatment: 2 level ACDF, C5 & C6, May 2012
    Moving Forward: SCS
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