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Reprogramming stimulator

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tamra73559
tamra73559

Hi, I am new here and have a question for anyone that can give me an answer. I had my St. Jude stimulator implanted June of 2015. I have not had very good luck with it and still in pain. Yesterday I have new pain that started where the device is (upper right buttock just below waist) and goes down my right leg to my knee. Worst pain ever and had no pain in that area before. 

I should be contacting my rep to have it reprogrammed, I have not had contact with him since my surgery in 2015. My question is, do I have to go to my pain management clinic and set up an appointment for this? I have not been back there either for the last 2 years. There was an incident that happened with them that makes me not to want to even step foot in the door, hence my suffering for the last two years. 

0 likes, 23 replies

23 Replies

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  • guy26112
    guy26112 tamra73559

    Posted

    Sorry to hear that your still in pain.. I always timed my reprogramming with my pain clinic appointments because I live so far away. I have had 2 failed spinal cord stimulators removed, Medtronics and Nevro HF10. I currently have a Medtronic stimulator with the leads placed between my muscle and skin in my low back. It’s kind of like an internal tens unit.The battery is in my hip and is the same used for the spinal cord stimulators. I have bad days and then better days, but my pain is never completely gone. They have so many Reps that work for them. I’m sure that if that person is still there and you don’t want to see them then they should send someone else. Good luck and stay strong.
    • Strbshortcake
      Strbshortcake guy26112

      Posted

      You said that you have had 2 failed spinal cord stimulators one with medtronics and the other with the Nevro HF10, did you have the medtronics implant done first and then the nevro.  May I also asked what happened with the nevro implant how long did you have it in for before they removed it.  I have had two Medtronic implants implanted and now have the nevro implant and have had it since august of 2017 and it hasn't done anything for me and now they are going in to do surgery in a couple of weeks cause the leads have dislodged and looped around my back I have been wanting a drug pump cause none of the stimulators have been working can you share with me

  • linda2365
    linda2365 tamra73559

    Posted

    If you still have your Rep card you shouldn’t have to go back to doctor. Hoping everything turns out well for you!
    • tamra73559
      tamra73559 linda2365

      Posted

      Don’t I have to meet with him someplace to have it reprogrammed? At my last appointment 2 years ago I wasn’t getting any pain relief so they had the rep contact me. They treated me so horribly that I never wanted to go back there. I just told him everything was fine so I didn’t have to go back. 
  • guy26112
    guy26112 tamra73559

    Posted

    I’m sure you will have to meet with him somewhere unless they will come to you house. Just give them a call, they have to reprogram it as many times as you want unless you have tried all of the programs. That’s when I had to call it quits and have them removed.
  • Strbshortcake
    Strbshortcake tamra73559

    Posted

    Hello I am sorry to hear about the issues you are having with your neurostimulator I can completely understand where you are coming from.  You should have been in contact with the rep they need to know whats going on with your neurostimulator.  Three years is a long time to go without having any contact with the rep or even the pain clinic you go to.  I have had 3 neurostimulator implants put in.  I have been dealing with the nerve condition for 18 years and it has gotten worse as the years gone on.  The last neurostimulator implant I had put in august of 2017 hasn't done anything for me at all and now I have to have surgery this month to have the leads replaced cause they have dislodged and looped around in my back which really sucks.  You said there was a incident that happened last time you went what happened?  Any questions you want to ask I will do my best to answer them

    • tamra73559
      tamra73559 Strbshortcake

      Posted

      I went thru a really rough time that fall after I had it implanted. My husband of 26 years moved out because he said he wasn’t happy (I was still seeing the dr at this time) but spring of 2016 I had a near successful suicide attempt. If my husband wouldn’t have come over and found me and started CPR I probably wouldn’t have made it ( I didn’t know he was coming over). When I went to my next appointment I was told that law enforcement had notified them about it and they wouldn’t give me any more pain meds. I didn’t take any pain meds in my overdose, sleeping and anxiety meds (I am bipolar). They never notified my psychiatrist who gives me my meds, he knew nothing about it. They treated me awful and I feel like I was just being used as a “statistic” in their so called war on opioids. It was bad enough when they resuscitated me I had police officers waiting and was taken in handcuffs to a psychiatric facility and forced to stay on a 72 hr hold, during which I was served with papers to appear in court. I was transferred back and forth handcuffed in a sheriff’s car. I was pretty traumatized by all that, and then to have them treat me the way they did just made it worse. One of the reasons I haven’t contacted my rep is because I can’t leave the house. I have panic attacks, and now social anxiety disorder. I only leave to go to the dr and my husband takes me. I think the longer it goes, the worse it gets. I don’t even think my pain clinic would take me back as a patient as I’m now probably classified as an overdose risk. 

    • tamra73559
      tamra73559 Strbshortcake

      Posted

      Aren’t you afraid to keep having them open you up for these surgeries? I know if I end up not getting any pain relief I am not having mine taken out. As long as it’s not doing any harm I’m leaving it in. I joined a pain group on Facebook and that is where I first heard of adhesive arachnoiditis. It’s where scar tissue can build up and put pressure on your nerves causing extreme pain, for which there is no cure and is 100% preventable. Research says it’s rare, but I have talked with so many people that have it. It can result from scar tissue building up from many steroid injections, and/or surgeries. I refused any more injections when I found out they are not approved by the FDA to be used in your back, and it is now being stated on the warning label. Pain clinics like to push them because they make a lot of money off them, and a lot of people in the group are being told by their pain drs that they won’t give them anymore pain meds unless they also have injections. 

      Feeling a little better today, but of course I’m afraid to move because that’s when the pain starts. 

      Thanks for your reply, and I hope everything works out well for you. 

    • linda2365
      linda2365 tamra73559

      Posted

      I had no choice with having a revision because the wires had got wrapped around the stimulator 
    • Patient
      Patient tamra73559

      Posted

      Hi tamra73559

      We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

      If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

      Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

      If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

      Kindest regards

      Patient

    • Patient
      Patient tamra73559

      Posted

      Hi tamra73559,

      We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologise for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

       

      If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The organisations below can help you explore your options, understand your problems better, or just be there to listen. If you are having such thoughts then please do reach out to one of these organisations who will understand what you're going through and will be able to help.

       

      There are several helplines in the US which can help you.

       

      They include the Crisis Call Center on Phone: (800) 273-8255;

       

      Hopeline Network on Phone: (800) 422-HOPE (1-800-422-4673)

       

      and the National Suicide Prevention Hotline on Phone: (800) 273-TALK (1-800-273-8255).

       

      Please do reach out - there are many good people who can help.

       

      For users outside of the USA please have a look at this page https://www.befrienders.org/directory

      Kindest regards,

      Patient

    • tamra73559
      tamra73559 Patient

      Posted

      Hi, thank you for reaching out to me. I am fine. I was just explaining a situation that happened to me a few years ago, in regards to someone’s question as to why I am uncomfortable going back to my pain clinic. I was wondering why my comment wasn’t posting, but now I understand your concerns. 

      I really am ok, but it is nice to know that someone cares enough to reach out to me when they think I might be of harm to myself. 

      Thank you so much!

    • dee_dee58221
      dee_dee58221 tamra73559

      Posted

      Hi Tamra, I have also gone on to the Facebook page that you are talking about, and you are absolutely correct !  Arachnoiditis is what I have from the many steroid injections and back procedures done.  And I really do think that the Drug Reps from Boston, St. Jude and others as well are making a huge amount of money $$$ and getting kickbacks from the company.  The pain doctors I have had put me on to the SCS and told me no more pain meds and was pretty much up a creek, so to speak.  Since the so-called opiate thing started, very few docs will give you pain meds, and also pee tests every 30 days.  I was so hoping that the implant would work and I could go back to work.  I'm very disappointed with the SCS.

    • tamra73559
      tamra73559 dee_dee58221

      Posted

      Hi dee dee, I’ve been doing a lot more research on it also and I’m pretty convinced that I have it too. Not as bad as some, but the uncontrollable jerking movements, the feeling of water running down my legs and increased pain. The problem I’ve heard that’s happening is that most drs won’t diagnose it, because it is caused by procedures that they have done and it would make them accountable. That, and the fact that it’s hard to treat. They main medication that is used for the pain is opioids, and we all know what’s going on there. I read that SCS implants are a multi billion dollar a year business. Some I’ve chatted with are saying their doctors are refusing them pain meds unless they keep having ESIs and SCS implanted. 

      I’ve gotten really lucky that my primary care Dr is willing to give me pain meds. Not the same Oxycodone I was getting before, but hydrocodone. Last visit she added zanaflex (muscle relaxer) and I was so happy she did that. She’s been trying to get my insurance company to authorize Butrans patches but no luck so far. I go see her again Friday and hoping with some interaction between my husband and the insurance company we can get it approved. I also had to sign a pain contract with her which I didn’t mind doing, I’ve never had a problem passing them before. 

      If you have a good relationship with your PCP you might want to pay them a visit and see if they can help in anyway. I was really surprised as I had only seen this dr a few times, she was recommended to me after my previous dr moved out of town. The original reason I went to see her was for a cough I had that wouldn’t go away. While there she saw how much pain I was in and took the time to talk to me about what was going on, and the procedures I had done. Her and her nurse are the most compassionate, empathetic drs I have ever been to since this whole journey started. 

      I wish you the best of luck, and please keep me posted on how you are doing. 

      Tamra 

      And yes, there are wonderful support groups that you can join on Facebook that can provide additional information and give some insight to what other options there are.  xxx

  • allaroundanne
    allaroundanne tamra73559

    Posted

    I have bad news for you, I think you are going to need to contact your pain clinic or find a new one, the battery pack is bothering your sciatic nerve and you are having sciatica.  I recognize the symptoms because this happened with my St. Jude stimulator too.  It fell a bit after the initial placement, I think because I had a big weight loss ( purposely) and there had been a fat pad between the nerve and the battery pack that was no longer there.  In any case, I suddenly had the exact same pain you are having.  No reprogramming will make this go away, you need the battery taken out since you aren't using it. If you don't want them pulling the leads out too they can do that, all they have to do is disconnect the leads at the battery pack.  The only area of surgery will be at your butt, so not to worry over any arachnoiditis.  

    Lynn

    • tamra73559
      tamra73559 allaroundanne

      Posted

      Thank you. I was afraid of that. I figured it was sciatica pain. I turned off my stimulator last night and while the pain is better, it feels like it’s just under the surface waiting to break thru again. Ever since I’ve had it put in, when it’s off, I still have kind of a buzzing feeling in my lower back. Is that normal? And I don’t know if it makes a difference, but I have gained weight since I had it put in. Something my dr and I are still trying to figure out as I’ve been closely monitoring what I eat but still keep gaining. I did post why I’m terrified of going back to my pain clinic, but it hasn’t been approved to post yet. 

      Thank you for your help. 

    • DJ1976
      DJ1976 tamra73559

      Posted

      Lynn is the go to person.  She gave me so much good information and was helpful to me.  Her advice is usually spot on.

      Dee

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