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Two weeks post op SCS, not getting the results I had hoped for

beverly62bbeverly62 Posts: 17
edited 06/11/2012 - 8:57 AM in Spinal Cord Stimulation
I am two weeks post op after having a SCS in my cervical area and periferial occipital nerve stimulator.So far I'm not getting the relief I had hoped for. I'm just hoping that all the pain I've went through from the surgery is not for nothing. I'm not getting very good coverage and what little I am getting it's very positional. I have to hold my head in uncomfortable positions to feel it at all. Also,since having surgery it's like my equilibrium has been effected. I get very dizzy and at times have to hold on to something to keep from falling. My ears have been checked to make sure I don't have an ear infection, but this all started right after surgery. Could the periferial occipital nerve stimulator be causing this? Though my doctor has done thousands of SCS mine was his first periferial occipital nerve stimulator and he's not sure if this could cause my symptoms. He said that post op swelling may be causing it and if it continues he would do some testing.
Has anyone else experienced this problem?


  • It may take a lot longer for your body to settle down from the surgery before you can truly get programmed correctly. Try and be patient and hopefully you will get the relief you need. I know that has been my experience with the SCS at least. I have had the surgery twice witht he same result both times. Don't know about the periferal occipital nerve part, but hopefully you will get good results!
  • I would definitely blame the post op swelling for it.My stimulator didnt give me coverage for weeks! Although I struggled and struggled with mine because I ended up allergic to it.Statistically though to be allergic to the stimulator its 1 in a million. But my Pain management Dr said that it usually take 6-8 weeks for the swelling to calm down.Some Drs tell the patient to not even turn the stimulator on for four weeks because of swelling and it could just be disappointing.Dont worry too much yet. :)
  • Week 3 - still swollen. Age: 49. Zero relief and in fact worse at the moment.

    After reading this post - I am not blaming myself or by body anymore. I'll hang in there if you do.

    It would be nice, however, to have some additional relief from this pain post-op. GEEEEEEEZ!

  • Thanks for the comments. I'm 6 weeks post-op and the pain from the surgery has subsided but I'm not getting any relief with the stimulator. The coverage is still very positional and it's just not going where I need it. My doctor says it still my improve once scar tissue attaches to the leads. I hope he's right. This was my last hope at getting any relief.
  • We haven't seen in comments in quite a while and I was wondering how you are doing?
  • I'm sorry to say I'm still not getting any relief yet. I'm three months post-op and my doctor just did another x-ray to make sure my leads hadn't moved. He said that they are as they should be. He said he may have to go back in and reposition the leads if I continue not to get any pain relief.
    I'm just so tired of going through the pain of these procedures and it not helping. But I just keep thinking that this my be the one that helps me get my life back. Thanks for asking, I'll keep you posted.
  • I was so sorry to read that you are still not getting the relief you had hoped for with your SCS. Thats a bummer.

    When you had your trial did you get good relief? At least 50%? Do you have the paddle leads?

    When I had my SCS inplant I only had surgery pain for about one and half weeks. But I did not have the paddle leads. Six weeks just seems like an awfully long time to still be in a lot of pain or even have a lot of swelling, unless of course you have the paddles.

    I had my SCS removed because my pain overpowered the stimulation. All I felt was tingling on top of the pain. I had very good coverage, right where I needed it but no matter how high I turned the stimulation I still felt all of my pain. It was not a good feeling at all. But the SCS just will not work for everyone.

    That is not your problem is it? It's just a thought.

    I now have a pain pump implanted and I get wonderful pain relief with it. I thank my lucky stars every day for my pain pump. I could not have lived with the brutal pain I was in 24/7.

    I do hope you get everything worked out and get some pain relief. Like you I had all my hopes pinned on the SCS. I was devistated when it did not work. But I am so very happy with my pain pump. I no longer have to take oral pain meds every day, just when I have a flare up.

    Best of luck.

    Patsy W

  • Patsy thanks for responds. When I had the trial for the SCS they had to reposition it three times because it kept moving. We never did get a successful result. The trial for the periferial occipital nerve stimulator did give me about 50% relief. Since I got some relief with it my doctor thought that I may also get relief with the SCS if the leads had stayed in place, therefore he went ahead and put both in at the time of the surgery. I do have the paddle leads and I think you my be correct that I'm just feeling the tingling on top of the pain. And like you it is driving me insane.

    I am on 100mcg fentanyl and they have me on 15mg of Oxycodone for breakthrough pain, which I'm taking 4 at a time and it still does not help. What is involved in getting the pain pump? I will talk to my doctor about this at my next appointment. Thanks for your help.
  • If that is what is going on with you it WILL drive you insane. It did me.

    You really did not have a trial for the SCS did you? That is your Doctors fault for going ahead with the inplant and not knowing if it was going to really help.

    It sounds to me like you may be a good candiate for a pain pump implant since your pain meds aren't helping that much. Neither did mine.

    I have a very long thread about pain pumps in the Pain Management forum. You may want to check it out but I must warn you it is very long!!(4 or 5 pages, over 150 comments) If you have any questions about pain pumps it may be easier to ask rather than to look for it in that tread.

    Some Doctors do not like pain pumps because they do not do the implants and really know nothing about them. But yes...do ask your Doctor about them. It does sound like that is what you need.

    Perhaps they can get your SCS working for you. But if they cant there is always a pain pump. You will always have that option. Do not give up hope yet!

    If I can help in any way....please ask.

    Best of luck.
    Patsy W

  • It does seem our pain is without end! You know, I actually had a half way decent day this morning. I took my 24MG of exalgo and muscle relaxer and didn't have to take my percocet until lunch time! Pretty incredible but then I ended up taking my full day's allocation and it isn't even 8 PM yet! I was supposed to see my PM's NP today but she went home ill. I'm going ahead with my SCS permanent implant in 2 days, on Thursday afternoon. It is the St. Jude's model. I have mixed emotions but I'm so desparate for any help after all these years that I'll take 10%. I'm getting leads in the lumbar and thoracic regions as both are disasters. I'll let you know how it goes. My previous PM doc said he considered the pain pump the "last resort" and wanted me to have the SCS as does my current PM but I sometimes wonder if the morphine pump would simply be better. Maybe better relief and no more or at leas a reduction of the narcotics in our GI systems. Please let us know why you PM says about the morphine pump. All the best, Jerome
  • I wish you the best of luck Jerome. I know how it feels to be desparate for any kind of relief. Keep us posted on your progress. Bev
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