St. Jude spinal cord stimulator, no pain relief
Posted , 39 users are following.
hi,
i had the st. Jude spinal cord stimulator implanted on May 16th, it is the newer one where you don't feel the vibration. I have gotten no pain relief, maby 5%. It has helped with my siatic leg pain, but no relief for my lower back. I am in severe pain and the reps have pretty much chalked me off after only seeing them 3 times. The last one said there is nothing more he can do.
Has anyone else had this problem, and what do you do about the pain. How high can you put the program up too?
2 likes, 128 replies
sandi68980 don81864
Posted
Hi My name is Sandi and I am a 71 year old female. I live near Austin Texas. I had a Burst SCS implanted on December 18th. My trial went good but this permanent one is awful. I do not understand why they can't get it to work right. I have had it reset twice already and will do it again tomorrow. I am very frustrated with this device right now. Has any one not been able to get it to work right.
Guest sandi68980
Posted
mine was installed over 18 months ago same result as yours no relief at all Reps were very rude and said its not their job to keep adjusting it Pathetic i haven't had it turned on since 1/2018 Awaiting approval from WORKERS COMP to get it explanted as the battery pack is very painful as it wasn't placed deep enough
cathy97287 sandi68980
Posted
hi sandi i had it implanted last february and am getting it removed hopefully in march i could not get it to work no matter how many times they reprogrammed it but like you the trial went well so i have no idea why its not working sorry i dont have better news for you sandi and i wish you all the best
sandi68980 cathy97287
Posted
Thanks everybody. I just can not understand why this is not working when the temp one was. I go tomorrow again and I know they think I am nuts !!
cathy97287 sandi68980
Posted
i really hope they can get it working for you but when you go tomorrow stand your ground my lad tries to convince me its in my head then he changed all my meds as he said thats why its not working even though the meds hadnt changed since the trial. I know how you feel Sandi and its horrible but youre not imagining it (or if you are then so am I and as you can see from this forum and many more like it, so are hundreds of other people). The docs or reps do not like being told their precious machine is not working and try to blame us in some way. Sorry a bit of a rant there!! I am just annoyed as thats the way I was treated too. Mine is in nearly a year and Ive spent that year back and forward to rep/doc to no avail and I cant wait for it to be taken out. Best of luck tomorrow let us know how you get on
Guest cathy97287
Posted
there is obviously a trend here with this particular brand and style stimulator (BURST)
I have a new pain DR who is trying to get an approval for a newer style, different brand that doesn't mask the pain to the brain but it BLOCKS it it operates at a much higher frequency than the other brands such as ST Jude and MEDTRONIC This new one is now approved by the FDA called the NEVRO SENZA
my dr says hes had amazing success when other brands didnt work down side is because it operates at such a high frequency 10kHZ it uses a lot of battery and has to have some recharge every day i think he said 45 minutes For me thats a small price to pay for pain relief
ask your doctors about this Nevro
cathy97287 Guest
Posted
that sounds great Robert and as you say you could put up with charging it every day if it works!! I have cauda equina syndrome and I saw my rehabilitation consultant yesterday who told me that she has only ever seen it work well for one patient. It will be very interesting to see how this new machine works and I wish you all the very best with it
Guest cathy97287
Posted
my Dr has been implanting them for about 18 months with around a 90 percent success rate A Lot of the patients like myself had already had another neuro stimulator implanted in my case two I had Medtronics first but had an uncooperative DR that refused to even take an xray to see if the leads had slipped I was told by another Dr "Who put this in you" which to ne meant he did a terrible surgery i have a paddle now and not leads i kinda gathered from this new system they would have preferred leads as they connect the new ipg to the existing plumbing sort of speak
cathy97287 Guest
Posted
what country are you in robert? do you think the docs that implant certain ones get backhanders? thats the only reason i can think why theyre so happy to put them in and once theyre in they try to convince you theyre working when theyre so obviously not. I have never heard of that new one you got but the statistics are great
Guest cathy97287
Posted
United Stares / California
cathy97287 Guest
Posted
ok that makes sense. I am in Ireland but i did look up the new one its looks great. my pain consultant has never even mentioned it but my orthopaedic surgeon thinks i need another operation on my spine anyway so cant wait to get this machine out now. I wish you well with the Nervo machine
Guest cathy97287
Posted
Thanks Be careful with the surgeries Ive had 2 failed spinal cord surgeries and regret having the second for sure and maybe even the first Now Workers Comp tries to put all the blame on my Arthritis and Scar tissue created by the surgeries ST JUDE and Medtronics also blame their stimulator signals cant get through my scar tissue i think they are full of it ITS like why did the original trial work?
Also my Wife has a 12 year old stimulator that is now ABBOTT WHICH WAS ST JUDE BUT WAS ORIGINALLY ANS SORRY ABOUT THE CAPS I GAVE UP TRYING TO TURN THEM OFF ON EACH WORD 😦 IT HAS GIVEN HER A LIFE BACK SHE RECHARGES ONCEA WEEK SHES ON BORROWED TIME ON HER BATTERY SHE WILL NEED A NEW IPG SOON SO I KNOW FIRST HAND IT CAN WORK ON THE RIGHT PERSON RIGHT DR SHE HAD AMAZING REPS BACK THEN THAT CARED SO MUCH SHE WILL GO TO MY NEW DR WHEN ITS TIME IT WASNT EASY FIR HER IN THE BEGINNING HER LEADS SLIPPED AND A THIRD LEAD WAS INSTALLED SO SHE HAS ONE DEAD LEAD IN HER BODY SO ANYHOW SHE FEELS THE STIMULATION BUZZ UNLIKE THE NEWER BURST I DID HAVE MY BURST PROGRAMMED WITH THE BUZZ AS THAT IS POSSIBLE SO HOPEFULLY YOUR REP HAS TRIED THAT IN MY CASE THAT MODE MADE MY PAIN WORSE PRAYERS FOR YOU
cathy97287 Guest
Posted
yeah tried with the burst too but did nothing for me. As for the operation appreciate the advice ive also had failed back surgeries behind me but this new ortho guy took over my case and he thinks that the hormone which was put
cathy97287
Posted
sorry robert sent that too quickly. anyway this guy reckons that in my second surgery which was a double level fusion with instrumentation (when they took one of the discs out during it it was very badly infected) anyway he said they put in a growth hormone to get the bone to grow quicker and fuse together and that it has overgrown and is in one of the nerve spaces he said he can remove it and it will relieve my pain however i will lose even more power in my right foot and i dont have a lot of that. you are right about being cautious I am going to get this machine out of my back then get a new mri then go back and see this guy and get him to show me what he means. He said its another big operation so i will also get a second opinion before I decide anything. ive had four surgeries and like your docs the scar tissue is blamed on a lot. take care of yourself great that your wifes one works well
tamra73559 don81864
Posted
hi,
i had mine implanted (i dont know why this stupid site wont do capital letter or punctuations, so im going to write in small letters, also, ive been trying all week to post a response but i keep getting that stupid amazon pop up) anyway, i WISH i had NEVER had this thing put it. i have the st. jude put in in june of 2016. i started out pretty good with about 50% pain reduction for about 6-8 months. my trial was put in on a friday and scheduled to be taken out the following tuesday, but it quit working on sunday. i had good pain relief with it for those 2 days so my pain dr decided to put it in. when the rep programmed it, i had to have it up in the 20-22 range. he said he never had a patient that had to have it up that high.
i have been pretty much in bed for the last 2 years, only leaving for dr. appointments, but i also have issues with anxiety. the last 6 weeks i have been in so much pain that ive been constantly sick to my stomach and vomiting. my husband was out of town on business 2 weeks ago, and i wanted to go to the hospital but couldn't get a ride and didn't want to call for an ambulance, so i called for a taxi. i couldn't even get out the door to the taxi it was so bad. i would have it taken out but i dont want to have another surgery. i go to my family dr (i haven't gone back to my pain management dr since they cut me off of my pain meds) next month and im going to have her take xrays to see if everything is still in place. i also have an artificial disc with a titanium cage above it at level L4-5 S1, so i want her to check that also, since my dr that did that surgery had to surrender his license for putting counterfeit screws in people and they are breaking in half.
i dont know if you subscribe to the Pain News Network (i have to check if thats the correct name) they send you email newsletter that has info on the opiod epidemic etc. i just got one not long ago that was about implants that are being put in and malfunctioning. spinal cord stimulators were at the TOP of the list.
i hope you can make sense if this, im kinda rambling on fast because i'm afraid i'll get that stupid pop up and lose everything i've written.
tamra73559
Posted
i just checked that newsletter i get from Pain News Network, and it said that after a year long investigation it found that 83,000 deaths, and 2 million injuries worldwide in the last decade, and SCS had some of the worst safety records. drs push these on patients because the make ALOT of money off them, and im hearing the paddle ones are the worst. i dont know why they would be implanting the paddle when their trail was with using the leads. for those having theirs taken out, please research Adhesive Arachnoiditis. its a very painful condition which there is no cure for, and can be caused by scar tissue buildup, or having multiple surgeries, especially from multiple steriod injections. i will never have another one of them since i found out they are not approved by the FDA to be used in your back. they are now required to put a warning on the label stating that. dr's really make a fortune off them. Also, my stimulator buzzes in my back constantly, even when it is turned off.