Severe SI joint pain and pain stimulators

Wow I can’t believe your story. It’s ridiculous they won’t take it out. I’m sorry you have gone through all of this. And to come across shady docs, that’s terrible. I am glad she got caught.
I also have neuropathy in both feet. They don’t know why. I am convinced it’s from all the back surgeries. My pain doc also thinks I have Complex Regional Pain syndrome. I also heard trials go well for people but not for the permanent stimulator. And for this reason I am leaning towards not going through this process of trying out the stimulator. What’s the point going through the trial if you’re not getting an accurate account of how much pain relief you will get?

I have Boston Scientific stimulator implanted. I have frequent adjustments to my programs as needed. I had the first implant in 2012. My doctor suggested I have an updated version in 2018. I watched my parents and brother go through more than one back surgery and have determined that is not for me.
I have small fiber neuropathy in both feet and creeping up my legs. I had two biopsies taken, one in the thigh and one in the calf that clinched the dx. I also have CRPS from a botched surgery on my foot that is spreading. In addition to that I have PAD which is moderately severe. I use a power chair where I can and use a rollator to go to apps. Walking is getting more difficult as I have stenosis in the lumbar area which just won't give up.
I walk in the pool 3 times a week and enjoy massaging jets of hot tube and then do my leg exercises my PT has given me. I am blessed to have an apartment in a beautiful senior independent living place. I feel the pool walking is helpful. My PT said to walk in the four foot end. I use a swim noodle to help with balance.
Sorry this is so long but I hope you find something helpful.

Oh wow that’s great to hear. You are the first one where I have heard positive results and is getting great relief. Thank you for your response.

I had an Abbott spinal cord stimulator implant in 1971, and the first year was wonderful! I experienced 75% relief. During the second year the generator needed several adjustments to maintain any noticable pain relief. In the third year, adjustments had to be made every three months because it was helping less and less. I still have it turned on because I believe it does help a little, and every little bit helps. The rep is looking into extending the leads because of my height, hoping that the therapy will be more effective in my feet.

Other treatments are Prednisone to slow the progress of CIDP, Cymbalta, Topamax and IV infusions of Privigen 2 days every four weeks that take 3.5 hours. Lying down and sitting in the recliner trigger the bad pain, and I put lidocaine cream 5% on my feet or soak them in tap water.

Neuropathy is affecting me in a number of places, the worst being my feet and ankles, but the pain is continuing to move to my knees. I have numbness in my fingertips and other places, and most of the time when I see a doctor about something the first thing they say is that it's probably related to neuropathy.

My neuropathy is idiopathic/genetic.

I'm going to stop writing and go to sleep while the Topamax is stopping the pain. I've enjoyed reading what each of you have had to say.

Jim

I’m sorry you are dealing with so much. Neuropathy has gone to my finger tips occasionally. It affects both my feet. Gabapentin keeps it under control for the most part. I hate when my feet has circulation issues causing it to be cold and numb. I wish they could figure out the cause of the peripheral neuropathy. I had two nerve tests and they tested for everything and they don’t have answers. I’m assuming it’s from all the back surgeries I had even though they say it’s not because the neuropathy is in both feet.
I still can’t decide if I want to move forward with a stimulator. I am hearing more negative than positive when it comes to this.
Hope things get better for you.

In reply to @eddiestella1
I had my simulators (2) removed at Columbia/ Weil Cornell in New York City. The surgeon was excellent and had much experience in putting in and removing stimulators.
The reason your doctor may be reluctant to remove is due to the wire breaking during this process which then calls for a different specialist entirely and another op. Fortunately this didn't happen in my case. Wires breaking at the point of attachment are not all that unusual with older units which mine was.
I had some relief, minimal I would say at first but the batteries started moving around and I thought I would be better off without them. It was neutral,-neither better nor worse. If I can be of further help let me know as I know the pain this affliction causes. I've been taking methadone for the pain and that has been very helpful and as unobtrusive as an opioid can be.
Good luck to you and search for an experienced, more skilful surgeon. One who hasn't done time in the slammer for medical abuses.

How much gabapentin helps you?
I've also heard more negative about the stimulator. Seems like a big risk to take!

I take three, 300 MG, three times a day. So nine pills a day. I’m reminded quickly when I forget a dose.
I agree. I don’t understand the point of the trial period for the stimulator for a week when it doesn’t work properly. You could get amazing results during the trial then get it permanently put in and have far less pain relief. Seems like a lot to go through for it to not work.

I would take a disc fusion any day over open approach SI joint fusion.
I just went back to see the doc who removed hardware 6 weeks ago. I still have horrible pain. He suggested he could take out what ever hardware thats left in me but he isn’t sure that’s what’s causing my pain. He suggested it could be my hip. I told him my last ortho doc thought it could be my hip. So at that point I went to a hip doc who felt like it wasn’t my hip causing my pain. This doc ordered a diagnostic injection for the hip. I’m exhausted. I cry every single day because of pain. Nobody or nothing can help. I stopped going to the pain clinic because pain meds didn’t help. Not even the strongest kind they give you after surgery. I’ve had over five docs tell me the pain stimulator won’t work with my type of pain. I am at a loss.
Where do you get CBD salve? Is that topical or gummies?

What can I say? The pain never seems to end, does it? The doctors are really only guessing about the cause , they use a process of educated elimination, if this doesn't work, then it's on to the next one, and so on.
My problem seems to be arthritis in the sacariliac (not spelled correctly!) joint, and other type of pain in muscle and nerves near or in the bursas. I have just started PT to try & get me "moving again". We will see if this works, as I have had many PT classes in the past.
CBD is available in my state in almost every drugstore and specialized "head shops". It is legal in my state. I would suggest you find out about the legality in your state, and then check it out on line. It comes in many forms: oil, salve, pills, gummies etc. Try a place in CA, called Sisters of the Valley.
You should not have to go though life in that sort of misery!