Chronic Pain members - Welcome, please introduce yourself

My wife was considering a drg unit before Lori did hers. After hearing everyone's experiences she has decided to do nothing at this point. She is managing her pain (PN in feet & ankles) through lifestyle mostly. Also carefully selected supplements (I estimate we spend about $300/mo. on supps) as well as kratom and Mary Jane. She is currently trying PALMITOYLETHANOLAMIDE (PEA) as well as Theracurmin (suggested by @jeba ) and she applies Penetrex nightly before bedtime. That's the thumbnail on her approach. Best, Hank

The trial is misleading in my opinion. They use a different type of lead (at least in my case) that produces a completely different result than the permanent leads they implant. It’s a simple case of apples and oranges.
Does the DRG SCSs work for CRPS? Of course. I’m a testament to that fact. The trial relieved almost 85-90% of my pain. In fact, I was planning to go back to work in my mind. Then I had the permanent SCS implanted and those dreams evaporated in the second it was turned on.
Do I get relief? Yes, 20-25%, maybe more on a good day. Is it worth it? Of course, it’s relief I can get no other way! It’s relief the opioids won’t give me. The Lyrica or Cymbalta I can’t take won’t give me.
So should anyone try a DRG SCS? Wow. Now that is a tricky question. It all comes down to risk vs reward. Is your pain management at a point it leaves you asking yourself, “Is this worth a shot?”
If the extra maintenance something you want and can do? Battery charging/changing, switching programs if and when pain levels warrant, dealing with hardware in your body when traveling, medical testing, etc.; Reprogramming as necessary; Changing hardware and inserted battery pack as required
The list is not extensive but it is a necessity and should be examined closely and with an extensive amount of forethought and prayer before undertaking such a life-changing treatment.
I knew my pain was not going to be able to be managed with anything other than opioids so my decision was almost a no-brainer. I had to try. Something. Anything. My results were not the greatest but acceptable.
Anyone else may or may not, hopefully may, have much more in the weapons cabinet to fight their pain.

@faithwalker Renee, I am seriously considering shutting off my DRG if yesterday's adjustment does not work. I am supposed to call my ABBOTT rep in a week, to let her know if I see any change in pain level, so I will respect her wishes. After a week, she told me to wait one more week, and see her again for another adjustment. I think at this time, I will just shut off. I am frightened, however. But logically, it is the only way of knowing this machine does anything. Also, I did not know the leads of the trial are different than the leads in the real deal. Terrible. This could explain why the trial helped, and the real deal does not. I will never know for sure. Lori Renee

@jesfactsmon Hi there, Hank, I do think Linda is smart in leaving the DRG go for now. If she can manage her pain without it, that is what I would do. I just had reached a level where my pain was killing my life. I could not cope, and often, can not now, either. Please let us all know how Linda is doing with her new PEA and Theracumin perhaps, in a few weeks. Give it time to see. I was going to buy the Theracumin, but could not dish out 90 bucks. I have taken Turmeric for easily a year, with no effect, so I just could not bring myself to spend the money. But if I hear from you that Linda likes it, then, maybe, I will try. Anyway, thanks for everything, Hank. Like I said, you are the best!!! Lori

If you turned off your SCS for longer than a week and you didn’t notice a change in your pain, then I’d say one of a few things are happening:
1. It didn’t work for you.
2. Your battery is not working or charging properly if at all.
3. You have a disconnection in one or more leads somewhere.
4. The leads have migrated or were not put in the right place.

Now the software is supposed to detect the malfunctions, however if it a partial or “short”, it may not if you cycles are still functioning.

As far as the placement? That is on the neurosurgeon.

I’m praying.

Please read my article on the cold laser therapy. It helps with all kinds of pain. Best wishes.

Please look into the Cold Laser Therapy. Find the web link on my article of PHN chronic pain. If you need me to post it again I will for you.

@lorirenee1 it is scary that they used something different in a trial than the real thing. I watched an interesting documentary about how manufacturers don’t really have to do much to get a device FDA approved. They simply tell the FDA it is based on a device that is already approved and then they are set to go. It sounds like there was a 20 year or so period starting in the 70’s that medical devices weren’t really being tested and easily approved so if you say your device is based on one of these the FDA approves the new advice. It just was posted on Netflix a week or 2 ago. Really makes you think.

@jerid, would you please post it again?

@faithwalker007 Wouldn’t it be easier to find/create a drug that takes care of this pain rather than all this nightmare of work you must go through? I think I just figured out the opioid/benzo conspiracy. All these operations and devices must cost a ton more than pain pills, don’t they? And because they don’t work in a lot of cases you keep trying some other surgery. It would be Interesting to find out the number of suicides because no one will help with the pain. I don’t think any reporting is done on that.

I’ll get off my whiney soapbox now.