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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@romans8

Did you ever find the “one doc”? I actually have similar symptoms. No answers yet.

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No unfortunately I have not. The same doc did all nine fusions. I did get a second opinion from a Mayo doc. He said I should get a pain stimulator. I’m seeing a third doc next week to get his opinion. I want them to fix my pain instead of putting a bandaid over it and forcing me to have more surgeries with the pain stimulator.

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@eddiestella1

Thank you. I am sorry you are in so much pain too. Did you have your SI joint fused too?
Also do you have neuropathy in both feet? I do. They don’t know why I do. They claim it’s not from all the surgeries I had in my SI and back. It started out in one foot but I now have neuropathy in both feet. Had all the test done and I’m in that percentage where they don’t know why I have neuropathy in both feet.
I wish you the best of luck and I hope you start to feel better.

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Pain pump has helped a little with the neropathy in my right foot. Doesn't burn quite so much. No SI joint surgeries. Not looking to have any more surgeries. Seems like they mostly turn out with no improvement or worsening of pain. Sorry you have had so little success in your quest for pain relief. As I read through all the comments from folks who have so much more pain issues than I do, I sometimes feel a little ashamed to be compalining about my pain. But, each person has their own pain that impacts their life in its own unique way.

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@eddiestella1

No unfortunately I have not. The same doc did all nine fusions. I did get a second opinion from a Mayo doc. He said I should get a pain stimulator. I’m seeing a third doc next week to get his opinion. I want them to fix my pain instead of putting a bandaid over it and forcing me to have more surgeries with the pain stimulator.

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At least try the stimulator trial, it's a relatively "simple" procedure that can be done right in the doctor's office. Will give you an idea whether it will provide any and how much pain mitigation.

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@heisenberg34

Pain pump has helped a little with the neropathy in my right foot. Doesn't burn quite so much. No SI joint surgeries. Not looking to have any more surgeries. Seems like they mostly turn out with no improvement or worsening of pain. Sorry you have had so little success in your quest for pain relief. As I read through all the comments from folks who have so much more pain issues than I do, I sometimes feel a little ashamed to be compalining about my pain. But, each person has their own pain that impacts their life in its own unique way.

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I’m happy to hear you are getting some relief from the pain pump. I was recommended by the doc to get the stimulator instead of the pump. If the doc I see on Friday concurs with the other doc then I will move forward with the trial on the Medtronic pain stimulator. I don’t think it’s going to help. The reviews from others don’t seem to be positive.
Thank you. I hope your pain gets better. I keep hoping each day they can figure out why I am in so much pain. It’s sad I look forward to going to bed at night because when I fall a sleep I am no longer in pain. I don’t have any issues sleeping.

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@heisenberg34

At least try the stimulator trial, it's a relatively "simple" procedure that can be done right in the doctor's office. Will give you an idea whether it will provide any and how much pain mitigation.

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Yes if the doc I’m seeing on Friday for a second opinion concurs with the other doc I will try out the stimulator. I’m hear though that many people get relief during the trial but when it gets permanently put in they don’t get the sane relief they did during trial so they end up removing it. This is my concern.

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@eddiestella1

Yes if the doc I’m seeing on Friday for a second opinion concurs with the other doc I will try out the stimulator. I’m hear though that many people get relief during the trial but when it gets permanently put in they don’t get the sane relief they did during trial so they end up removing it. This is my concern.

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During the trial, I received about 89% relief. Permanent implant dropped to about 60%. ^0% was still pretty good. Lasted about 3 years, the just stopped giving relief. Of course, so did the pain meds. Who knows what happened?

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Could you have it removed and have another new one put in? Maybe the new one would work since the other one lasted three years. Right now I’m on the top pain meds. The meds they give you right after surgery. That also stopped working. So I exhausted anything that would help with pain except for the stimulator possible in my future.

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@heisenberg34

You can have a trial of the spinal cord stimulator. Simple process. It’s done in the doc’office. Temporary electrode is placed along the spinal cord, and temp leads come out and are connected to a temporary stimulator battery that’s taped to your back. Wear it for 3 to 5 days. See if you get at least 50% pain reduction. If not, on your way. If you get decent relief, then you are considered a good candidate for the permanent implant. Then the ball is in your corner. Similar process with the pain pump.
I got about 80% relief with stimulator trial. Only about 60% with permanent implant. Still good, though.
Hope this helps. God bless.

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Very good comment. I have had two. I would only say that I should have had the trial for the 5 days. The doctor is concerned with infection. That is why she only let me go 3 days.
I had the first one removed, 2007. The second one 2011, I want the battery out. The stimulator failed. No one will remove it unless I get a new stimulator. I have been having issues since 2013. My new pain doctor does not want to mess with it because removal may cause more problems. I finally agreed. If the trail goes will, talk with your rep first. Have a list of questions. Everyone I have talked with about their stimulators say the reps have been great. Mine was. I know my comment is for the person considering getting one. I thought your information was excellent.

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@drorvick

Very good comment. I have had two. I would only say that I should have had the trial for the 5 days. The doctor is concerned with infection. That is why she only let me go 3 days.
I had the first one removed, 2007. The second one 2011, I want the battery out. The stimulator failed. No one will remove it unless I get a new stimulator. I have been having issues since 2013. My new pain doctor does not want to mess with it because removal may cause more problems. I finally agreed. If the trail goes will, talk with your rep first. Have a list of questions. Everyone I have talked with about their stimulators say the reps have been great. Mine was. I know my comment is for the person considering getting one. I thought your information was excellent.

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Why won’t any doc remove your stimulator? I am sorry you have gone through so much with these stimulators. I feel like there are more problems then they are worth.

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@eddiestella1

Why won’t any doc remove your stimulator? I am sorry you have gone through so much with these stimulators. I feel like there are more problems then they are worth.

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The neuro surgeon who put in only the wires through up his arms and laughed at me 10 years ago. He said it would be too traumatic. That was to remove everything. in 2019 I asked to have only the battery removed because it was old and pushes on my spine on the left at my waist. The doctor who puts it in is usually the one to remove it. My pain doctor doesn't think I should have it removed. I just turned 70, but I don't look it. I swim forty laps most days. I am fortunate to get pain medication. I read many do well with the trial and then not so well with the final implant. The pain doctor put in the battery, but she is doing time in the federal pen for taking Fentanyl kickbacks. This was in Seattle, WA. She made the national news on ABC August 19, 2019. This was long after I stopped seeing her. She was a pill pusher for sure. I know the stimulators are working well with diabetic's. I have Complex Regional Pain Syndrome. It is a form of neuropathy.

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