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SCS advice...

Posted , 3 users are following.

Survivor42
Survivor42

I was diagnosed with CRPS in 1996, way back when it was still called RSD. I only had it in my left arm then, and in 1999, I had a spinal cord stimulator implanted, which changed my life. I went back to school, I could work, and things were significantly improved. In 2007, after I lost the baby weight from my first pregnancy, I had to have the battery removed, and they botched the surgery, yanking the wires, and making my implant unusable.

Until now.

My new pain doctor just took an x-ray, and he thinks he can work around the wires that are already there, implanting a whole new SCS for the CRPS that I now have in my left arm and foot, but I don't know what to do. I've never heard of another situation like mine, but I thought I'd throw it out there.

I'm also wondering how bad the trial is now. 20 years ago the pain of it rivaled natural childbirth. Also, how is the recovery for the actual surgery now? I'm a mom now to two active little boys--no longer a 21 year old with nothing to lose...

I'd appreciate any insight anybody could give me.

2 likes, 2 replies

2 Replies

  • gemish
    gemish Survivor42

    Posted

    Hi, I had my SCS trial and definite implant on may 2017. I was in a lot of pain before the trial and the procedure was not that painful to me. It was very uncomfortable, specially since my doctor told me not to lift my arms, not to twist or bend my back, not to lift any weight. Someone had to wash and comb my hair for two weeks.

    In the hospital I got pain medication through my IV, and still had some pain and discomfort but it was tolerable. 

    The recovery time for me was about one month, but after two weeks I felt much better.

    Hope this helps, wish you the best

  • elke57243
    elke57243 Survivor42

    Posted

    Hi, I had the trial a couple of months ago & the permanent just under 2 weeks. If your new pain Dr can salvage your leads I would imagine the process to be pretty easy, the battery which is taped to your back may be annoying. You need to ask for the restrictions, especially as the leads are already imbedded. If the leads aren't salvageable, my trial leads were percutaneous (have a Boston Scientifiic) & inserted from thoracic region into C2-3. The trial was sore but not too bad (insertion site) & it made me realise how bad I actually was. The improvement in colour, warmth & reduction of spasms was incredible. With my permanent implant, the same type of leads as the trial were used. The battery pocket is upper buttock which hasn't been a problem. The thoracic leads insertion site is still very sore, I had lots of bruising & swelling & it's an already hypersensitive region which I have had repeated RFD (nerve burning). The anchor site in my upper back feels as though a stitch is pulling, though I imagine will settle with time. The restrictions you may find tough with younger children, eg no lifting of anything over 2kg, twisting, extreme movements etc.. for 3 months until embedded. Good luck with your decision & I hope whatever pathway you choose to take that you will get some relief.

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