Severe SI joint pain and pain stimulators

Posted by eddiestella1 @eddiestella1, Jul 21, 2023

Has anyone had severe SI joint pain from failed surgeries and had success with being in less pain from the Medtronic pain stimulator?
My pain is on a level of torture pain. I need relief. I’m on hydromorphone and it doesn’t even touch my pain. It’s awful.

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@heisenberg34

You are welcome. I wish I could reach out and give you a healing touch. I keep telling doctors, "Look, for every effecr, there's a cause. My effect is that I have continued pain in my buttocks. Therefore, something is causing it. Please identify the cause and treat it". Ha! Lot's of luck.
Even if you are hesitant to have either of these procedures, I would want to know, by having the relatively non-invasive trial, if either one provides relief. But, that's just me. I wish you well on your pain journey.
God bless!

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Same here--why do doctors do nothing to help us but suggest the same old useless meds, devices, and procedures?
Very simply, I think it's because they don't know what to do. It's beyond their capabilities and the current knowledge of medicine.
Like everyone else responding here, I've tried it all. All of it does not work. The doctors hem and haw and try to act helpful (well some do!).
So I guess we are on our own! I like Ben Gay and all those type creams- they give relief for about 10 minutes!

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I would love to have a doctor tell me, just once, "I don't know what;s goingon, but let me consult with some of my colleagues. If necessay, I know a guy at XYZ medical center who specializes in this kind of thing." Do they think that if they confer with someone else, they will be considered less of a doctor?

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@tiredpup1

I had the failed surgeries and decided to take the trial for the implant. I got really good results and have had the permanent one for 3 years now. I have never been sorry. I get about a 95 percent relief with it. My Implant is good for ten years, and it's given me a new lease on life. Mine is a Boston scientific also produced by Medtronic. Mine is located in my back right above my hip. Good luck with the trial.

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I’m happy to hear you have great results. I can’t imagine not having pain. I’ve had it for so long and it’s getting worse. I’m glad to hear the implant works. Did you have your SI joint fused?

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@mermaid7272

Same here--why do doctors do nothing to help us but suggest the same old useless meds, devices, and procedures?
Very simply, I think it's because they don't know what to do. It's beyond their capabilities and the current knowledge of medicine.
Like everyone else responding here, I've tried it all. All of it does not work. The doctors hem and haw and try to act helpful (well some do!).
So I guess we are on our own! I like Ben Gay and all those type creams- they give relief for about 10 minutes!

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I agree! Have you tried Capsaicin? I like to put that on and then lay on the heating pad. Even though it says not to do that. It helps burn my pain away. I also like the tens unit. But it’s a pain to have on with it falling off while walking around. The pain is debilitating and I wish they can figure out how to fix it. I’m far in worst pain than I was before my SI was fused. I never should have allowed the doc to fuse me in the first place let along 9 times. Pain and feeling desperate was the driving force.

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@heisenberg34

I would love to have a doctor tell me, just once, "I don't know what;s goingon, but let me consult with some of my colleagues. If necessay, I know a guy at XYZ medical center who specializes in this kind of thing." Do they think that if they confer with someone else, they will be considered less of a doctor?

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I hear what you are saying. As a result from one of my SI joint fusions, I ended up with a hernia. So I had to have an incisional hernia surgery. There was a doc that was going to do the open approach and I would be hospitalized for five days after. I didn’t know there were more options. He could t do his surgery by the ended of the year so I started calling around to other docs. I found one doc that said I could have robotic surgery and would go home the sane day. So that’s what I did. I was so greatful I called around and realized there were more options. You have to be your own advocate.

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@eddiestella1

Thank you for the info. Are you also suffering from SI joint issues? I haven’t heard a positive outcome yet for the stimulators or pump from anyone. I’m reluctant to get it. I really wish they could figure out what’s causing my pain instead of masking it with something that by the sounds of it may not work.
I hope you can get pain relief too. It sounds like you have been through a lot.

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There are mixed reviews on the SCS. There is a section devoted to that conversation. I am glad to have mine.

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@bunnybear

There are mixed reviews on the SCS. There is a section devoted to that conversation. I am glad to have mine.

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I’m happy to hear this works for you. I have read so many where it hasn’t worked.
Can you feel the implant inside of you? Did you get the rechargeable Medtronic one? That’s the one I will most likely get if I go through with this.

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I have the Nevro w/remote. The only thing I feel is the battery pack on my back at about waist level. I never notice it until I feel back there for it. The leads themselves are located within the epidural space alongside the spine as I understand it. The SCS is not perfect. I just posted a new discussion suggestion about why the SCS seems to quit. I described my problems there. But overall it has definitely been worth it so far for me. My friend has had her Boston Scientific for at least 5 years and says she probably couldn’t have gotten out of bed by now without it. I have another friend who says even her trial failed so it is mixed bag.

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@bunnybear

I have the Nevro w/remote. The only thing I feel is the battery pack on my back at about waist level. I never notice it until I feel back there for it. The leads themselves are located within the epidural space alongside the spine as I understand it. The SCS is not perfect. I just posted a new discussion suggestion about why the SCS seems to quit. I described my problems there. But overall it has definitely been worth it so far for me. My friend has had her Boston Scientific for at least 5 years and says she probably couldn’t have gotten out of bed by now without it. I have another friend who says even her trial failed so it is mixed bag.

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What does SCS stand for? The Nevro can’t go in MRI’s correct?
I wish the trials were right on with accuracy. I hear some get great relief with the trials. Then have it out in and they have significant less pain relief from the trial. I don’t like the fact that you can feel the nevro. Does that bug you at all?

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@eddiestella1

I agree! Have you tried Capsaicin? I like to put that on and then lay on the heating pad. Even though it says not to do that. It helps burn my pain away. I also like the tens unit. But it’s a pain to have on with it falling off while walking around. The pain is debilitating and I wish they can figure out how to fix it. I’m far in worst pain than I was before my SI was fused. I never should have allowed the doc to fuse me in the first place let along 9 times. Pain and feeling desperate was the driving force.

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Interesting, but disturbing to hear about your SI joint fusions. I was going to ask new, never seen before, doctor about that as a last resort. But I guess that is not the answer. However
I have a friend who had a fusion in her spine that did work, She said it took a year to completely heal and the surgery was quite painful and difficult and she is a nurse. But it was not her sacriliac joint.
I am trying CBD salve & then the heating pad, again, it only works for a short time. CBD and all of that "plant's" ingredients, both medicinal and recreational, are legal in my state.

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