St. Jude spinal cord stimulator, no pain relief

Hello dpilot 

Sounds like your implant was done exactly like mine EXCEPT they turned mine on immediately after surgery. I don’t ever turn mine off to be honest. 

I live in Australia. It would appear that different Drs have different methods. 

Where was your “ET” (my little Alien) placed?  Mine is in my abdomen just above my navel but unfortunately it’s causing me so much pain now that I

Want to have it removed.  

My trial was one lead and my implant was two leads. I was able to view the leads on an x-ray monitor as the doc slid each one in place.As they placed each one they turned the parathesia mode and adjusted each one's position base on where I told them where the coverage was affecting my body. This is day 3 of recovery and the numbing has worn off causing the normal nerve pain to return alongwith the pain from the surgical wounds. Doc called today and said this was going to be the worst day of the recovery. It's not pleasant. I'm anxious for the wounds to heal and that pain to eventually disappear. Then at the two week point, the'll turn on the stimulator and hopefully it will function at least as good as the trial. I can't imagine it not working for you. I do know that soon after the initial surgery, they can reposition things and I concur that the programming has a lot of trial and error before it gets precise. I hope things get better for you.

I wish things were as clear for me. Good luck. I’m glad you’ve got great caretakers. 

Since I last wrote here, I have had my stimulator removed in Nov.  2017.  It never worked from the getgo.  The trial worked, which was 2 leads.  The surgical implant was the paddle. The tech were of no help.  Never had any relief for the 7 mos. it was implanted.  So made the decision to have it removed.  I still have pain 24/7 but am using pain mgmt and chiropractor.  I will turn it around at some point.  

I hope everyone who who has a stimulator, mine was St, Jude, gets the pain relief that you all need.  Wishing all speedy pain relief.

 

Hi just wondering how you are doing now. Has your SCS gotten better? You stated driving is an issue. How so? Do you have to go to the doctors office every time they program it? 

I have only had the St Jude trial done for 4 days back in Sept. It helped with my lower back pain. I'm in the process of fighting the stupid insurance company to get the perm implant. I am just reading about real people experience. I just want to know all the facts. 

I live in 24 hour pain. I used to take a ritual of different pain pills that manged my pain on a daily basis. However, due to the abuse of others the doctors won't prescribe pills any longer. Even if you are in severe chronic pain.The doctors don't want to be responsible. It is a shame they will no longer prescipe what actually helped my pain. That's why for the last year I have been trying to get the SCS.  

Any other information would be helpful. 

Thanks

 

Hi, Julia! 

St Jude Trial is far from implant. (As I gotta day everyone is different) but with my experiences, I now live with the pain we meant to help, new pain from another surgery (scar tissue, laminectomy) and new pain from my L5&S1 ready to pop (nerve damage). I often ask myself and others, “Was I in equal or less pain before the Stim?” I wish I could confidently answer that although I probably wouldn’t remove it now simply in fear of additional damage! 

I thought that my medicine regimen would decrease after the implant, and that is absolutely false. I have the St Jude DR Burst that has both a “continuous mode” and a mode/program in which I do not feel it working... I keep mine on continuous mode so that my low back and both legs constantly feel a vibration/pulse similar to a vibrating chair. I will prob have the battery changed earlier due to the mode/program on which it stays. 

I am 35. If I could go back to last summer, I would take with me the frustration, pain, perseverance, persistence, advice and reinforcement of confidence VS defeat, desperation, depression and urgency... I would have let go of so much judgement and made more sound decisions. I would have started then battling for wellness instead of management.

So much comes with this fairly new world of tech..and we are the ones that suffer and the ones that will prevail. 

A Percocet or few, stimulator, brilliant neurosurgeon still doesn’t touch the support and understanding found in this group.??

I am wondering how long it took for them to okay the removal of the device? My elderly Mother had one put in 3 months ago and has had a plethora of problems, (can’t operate, falling, migrated more intense pain), but they are trying to put her off about removing it. She is on Medicare and it took about a year just to get the implantation approved.

I am of no help.  I had mine removed 11/2017.  Never achieved any relief from the permanent implanation.  Oh after suffering for 9 mos. had it removed.  I never got any satisfaction from either St. Jude nor Abbott who bought it.  Lousy techs,  they all promised a lot more than I received.  

For me personally, would never do it again or recommend it. But for all who have it and have success, KUDOS.  For those who want to try it, go for it.  Good luck to all.

Your Mom may have other factors to consider besides medicare approval in getting this removed.  She is elderly and this is a surgery.  They need to look at the risk to her health versus the risk of just leaving it in her, turned off.  One thing they might be able to do is just remove the part that migrated, that's causing pain and not get into removing everything.  That could even be done under a local anesthetic.  Elderly people just don't respond well to anesthesia ( I was an anesthesiologist), the less they get, the better off they are!

Lynn

Thanks, I thought the same thing! They have now found out that as a result of one of the falls, she has broken a vertebra and will have whatever plasty it is where they inject the cement. She is taking a lot of pain Meds now and I am afraid of her taking too much and not waking up. She is very stubborn and my Dad is lost on what to do about all this mess. She was somewhat secretive and vague about the getting the device and of course she thought it would be the end to all her pain. I wish I had found this forum before that, but the truth is that she probably wouldn’t have listened to me anyway.

Oh my, well I still say, do as little as possible.  You are right to worry over too many meds.  There is actually now a specialty in medicine called geriatrics that you can get board certified in, solely because the elderly are just so frail and harder to take care of than younger, healthier patients.  It's also the strange behavior, like the secretive stuff she pulled surrounding her getting the SCS. It may get to the point that you need to get a sort of power of attorney- but it's just for health care for her since she isn't making appropriate decisions.  If she ends up seeing multiple docs, they will each put her on drugs and rarely pay attention to what else she is on, it is SO important that she have an on the ball primary care doctor who looks at EVERYTHING regularly.  Otherwise these poor older folks end up on drugs that aren't supposed to be taken together, etc. So, do step in and go with her to her primary care doc and make sure you think he/she is up to snuff.  That alone will be a huge step in making sure she gets proper care.  HTH

Lynn

I was just checking up on you, and seeing how the implant worked out for you. I hope you ha great results out of it. I went thru the trial. But mine was with 2 leads, but they will have to use the paddle leads on the implant, when I have it done. I already have 1 stimulator ( VNS) for my seizures. The type you had put in, is the like I'm going to have put in. The trial went great eliminated my leg pain, but still had back pain. Your feedback would be greatly appreciated. Again I hope yours is working well for you. Thanks.

I highly recommend doing research on the "cement" they use on your mom. Some cause cancer.