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.
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.
If you still have your Rep card you shouldn’t have to go back to doctor. Hoping everything turns out well for you!
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.
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.
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
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
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.
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.
I had no choice with having a revision because the wires had got wrapped around the stimulator
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
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.
I had that short-lived weight loss by basically starving myself which I couldn't maintain. My problem is basically lack of activity and the drugs I am on for pain, principally gabapentin which makes me hungry all the time. Are you on any drugs? You need to look at the list of side effects to see if that's the problem in your weight gain. My other problem with weight is I have been hypothyroid since my 30's, I am 58 now and I do keep it well controlled but it is always a factor. Since chronic pain is an inflammatory process and some forms of hypothyroidism are, you should have that checked as being hypothyroid will wreak havoc with your weight. I do believe that any change in your weight after placement of the battery pack is bound to affect it and may cause it to migrate. It is easy to imagine a bigger fat pad pushing it out of the pocket it is supposed to sit in, just like my shrinking fat pad let it drop onto my sciatic nerve.
As for the buzzing in your back, I suspect that too is related to having a foreign body in your back that is rubbing on your nerves. If the battery pack moved, it may have tugged on the leads and now they are misplaced too and pressing on nerves as they leave the spine just as a bulging disc would do. I really think you need a surgical consultation to evaluate what needs to be removed. Good Luck!
Lynn
Boy you sound like me. You should contact your tech and meet him to have your stim re-programmed ASAP. Can you meet your tech at the surgeons office instead?? If pain mgmt is not an option due to an issue you should ask to meet where you hade the surgery. The tech can call your surgeons office to find a time for you too meet.
Your Pain is exactly where mine is. Buttocks, down outer thigh around knee to foot, which is numb. The pain is sharp that it affects sleeping, getting out of bed, standing, sitting in certain chairs and last but not least walking. It stinks.
You May have better luck. I also suggest you call Abbott and talk to the tech people. They also can walk you through programming it yourself if you cannot meet with your rep. Keep me updated on how it goes.
Dee
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
My problem is also lack of activity compared to all the walking I used to do before my surgeries. I was on gabapentin but wouldn’t stay it. It didn’t help with my nerve pain and also because of the weight factor. I also have bipolar and a lot of the side effects of meds is weight gain, which my dr knows I won’t go on because the weight gain just causes me to be more depressed. My thyroid was checked at my last appointment and was normal.
I miss my daily cappuccino, can’t remember the last time I had a French fry or any type of potato, no white bread and I’d give anything to have a Cheeto right now!!
I’m going to talk it over with my PCP on my appointment on the 25th to see what I should do since I have a pain contract signed with her now. I might need her referral for whatever I decide to do or where to go.
Thanks!
My surgeon is also my pain management dr. I was referred over to him when my original dr (who I loved) moved out of state. We got off to a bad start my first appointment with him when I was 46 (59 now). He walked in the room and the first thing he said was that I was too young to be on pain meds the rest of my life. He hadn’t even looked at my file to see that I had two surgeries, the last one being a disc replacement and titanium cage above at level 4-5S1, with no pain relief. When called out on it (my husband called the director of the clinic, in spite of me telling him not to) he prescribed my meds but refused to see me anymore and pushed me off to a PA (who I liked better). Unfortunately, I still had to see him for all further injections and surgery.
I don’t know who you are referring to when you say Abbott, I have a St. Jude SCS and my rep is out of Milwaukee.
St. Jude was bought out by Abbott.
I see that now after doing some research. Thks
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