St. Jude spinal cord stimulator, no pain relief

thats terrible patty i also had a fusion but didnt have to get the paddle. Its so true what you say though that docs will never go against each other. At least in the states you can go to another city in Ireland there are so few orthopaedic surgeons here that you will never get one to go against another you would have to go to another country eg scotland england or wales. i wish you well Patty

*OH my GOD Robert thats shocking. Number 1, of course its the Reps job to help you with reprogramming, that is what they are being paid for surely? How dare they. I am not into causing trouble for the sake of it but let me tell you Robert, had I experienced that attitude I would have been on the telephone to the head of the organisation to get it sorted. I am also at a loss to understand how and why your Drs get away with being so negligent. (I live in Australia ) One would think they would be terrified of being sued. From my own experience, the Dr responsible for putting the implant in has the onus for related problems squarely on his/her shoulders. How can they refuse to help you? I don't get it, seriously Robert......I am seeing so many people on this "blog" (not even sure what a blog is to be honest, but sounds ok ) experiencing similar problems with Drs...... I do understand that your Dr lost his accreditation but whomever initially referred you to him ought to have some responsibility there surely? I am sure if you consulted a law firm such as SHINE LAWYERS (I used them here in Australia and they were brilliant - I will explain later) I have to tell you I would take the buggers to court. As with any surgery , if errors are made then they are duty bound to rectify the situation.....

I shall get off my soapbox now and explain my own experience.

I had an accident at work in 2006 and fractured my left leg. Everything went pear shaped and after 6 surgeries was left with constant pain which was eventually diagnosed in 2016 as nerve pain (forgotten medical term but Neuropathy of some kind !) by a Professor at a pain clinic, and after trialling various drugs which didn't work, he suggested the St.Jude Neurostimulator and I thought "why not"? I did the trial in 2017 which went well so went ahead and had the permanent "Alien" implanted in my abdomen a few weeks later......took a bit of getting used to but it was great and worked immediately. Once all the swelling settled down and I was able to get back to normal I realised it hurt me to bend forward and it felt like the "Alien" was catching on something.. I don't have much fat in that area so it I could really feel it. I discussed it with the Professor and he was so helpful and decided he would move it as much as he could. After that op it was better and much more comfortable. All was fine and still no pain in my leg but several months later I began getting burning pain in my right side near my ribs which was the area where the leads came around to join on to the "Alien" in my abdomen. The Professor examined the area and was at a loss but wanted to keep an eye on it over the following weeks. He gave me some pain medication to help but to me, it was replacing one pain problem with another ....

Over the following weeks I also developed back pain around the incision where the leads were threaded up next to my spine. However, STILL no leg pain. Incredible.....

BUT one morning while towelling myself dry after my shower I felt a little "nodule" type thing which seemed to have grown on the edge of the scar on my back.. Initially I wasn't concerned but within 2 days it had doubled in size and as I obviously couldn't see it asked my partner to take a photo of it with my phone to let me see it.... To be honest I was shocked as it was purple and the size of a pea.

I called the Pain clinic and asked them to pass on an urgent message to the Professor and true to form he called me back within 10 minutes and asked me to come straight in to see him......its a 40 minute drive but within an hour I had seen him and been booked in for surgery first thing the next morning!! He told me if he could, he would remove it that day. He said it appeared a type of infection had developed and was working its way through the scar tissue.....

The following morning he removed the stimulator and leads and managed to stem the infection before any more damage was caused.....

I had only had the implant for 12 months and although it eliminated all my leg pain, my body just wasn't happy with it at all.

BUT, it was actually worth the 4 surgeries, because in spite of everything else, 12 months on I still have no pain in my leg and the Professor said its a

phenomenon called "NEURAL PLASTICITY" whereby the brain has basically been re-wired to believe there is no pain! How incredible is that?

I do realise how fortunate I am to have had such a brilliant and caring Doctor.

I have read so many horror stories, such as yours Robert and that of your wife, and although my outcome was amazing it was a dreadful 13 months and I don't think I could, in all honesty, recommend this procedure to anyone else......

The Professor is using, amongst other things, a non-surgical method which is basically re-training the brain, and which has been used successfully on U.S. troops with neural injuries for several years. i cannot remember the name (but could make enquiries) but it only requires half a dozen hour long sessions with someone trained in that field.

I realise this has been a long drawn out reply Robert but pray you may glean even just a little help and I will add you and "Mrs Robert" to my prayers

The rep does all my adjustments and is awesome she has been working hard toward my improvement. She believes since my lead moved up higher and not lower is why she is having so much trouble. She said in all the implants she has only seen this 3 times. The place I went the doctors there only do these and the Parkinson's implants. They are working together with my rep to determine whether I need a different wave length implant. I have mine where it has what they call a tonic program and that helps a lot. It is the kind you can feel the therapy and that kind of numbs me up I use it to walk. My doc is awesome i know he does something like 800 of these a yr. Make a trip to Oklahoma and visit the Oklahoma Pain Management center. I know that's a bit of trip but maybe they can help or refer you to a good rep in your area. They are exploring options for me to improve I know we will get there but sometimes I get discouraged. The lead moved when I fell they think. I took a fall within a few weeks of having it implanted. I have a leg that is just jello most of the time. I wouldn't sit back and rely on them to do the right thing .I would get on the phone and make it happen. Nobody will offer help you have to seek out the help and be proactive in your healthcare. Put on the war paint and make your life better threw aggressively seeking out the best of the best and make your case for a better life.

Also my therapy that is where you cannot feel it I have it set real low or it makes the pain way worse.

I've tried both the tonic and the way you cant feel it neither worked i have a paddle anchored in so it cant move my Wife's leads slid down and she had three surgeries one to raise it and one to add a third lead she has a lead in her not being used hers probably moved in Aqua therapy after surgery There is a newer stimulator by NOVEL That works at a very high frequency 10-KHZ rather than our current low hertz stims The success rate us over 80 percent the downside is it is a battery hog so I'm told id have to recharge every day for about 45 minutes Workers Comp is dragging their feet for approval so i am trying to get my lawyer to drag their butts to court, Again! If a revision surgery doesn't work for you, you may want to look into the NOVEL system

DAVID I AGREE WITH U I SPOKE TO MY REP AND THEY ALL WORK AS A TEAM IN NEVADA, IVE NOT TOUCHED A PAIN PILL IN OVER A MONTH AND FEELING GOOD.

you are lucky!

Sue your doctor and Medtronics! Medtronics has a horrible history of hiding issues with their products from the FDA in a rush for approval and subsequently hurting people and being sued.