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
KStimNo2 don81864
Posted
I have a difficult case. My pain is in the right side of my abdomin, just below my ribcage. I had a fantastic trial years ago as part of the initial testing of the device by Spinal Modulation. After getting the implant I had a difficult recovery. But eventually had almost 0 pain.
The pain came back gradually until the stimator only covered about 20% of my pain. Then it came time for a battery change so they put in new leads as well hoping to improve my pain relief.
I am now 4 weeks post-op. I am still having consderable back pain/ache which I thought would be better by now. My rep has made adjustments 4 times but the nerve/side pain is not better yet.
I'm getting nervous that it is not yet working. I have been told the closer the pain is to the spine, the harder it is to block it.
More over, my back (where the leads were inserted) is so sore and hurts if I sit up strait in a chair for very long. But I feel like I should be back to work by now.
Has anyone had similar surgery recovery issues?? Has anyone here had pain in their trunk area that responded to the Axium stimulator?
To those with issues with their rep or not getting the answers they need...demand that they give you a new rep and that you get the info you need to feel comfortable. There are some good ones. And I personally feel no one should put up with any doctor that does not make them feel supported and confident in their care.
cathy97287 KStimNo2
Posted
Disley66 KStimNo2
Posted
I had my implant 12 months ago and trial went ok. Then the permanent was put in and it took quite some time for the lower back where the leads had gone in to settle down. About 4 months ago I had to have the implant moved as it was in my abdomen and too close to my waist so it was really difficult to bend. Sooooo, that was done on 16th November last year. I had an even slower recovery for some reason and then I started getting pain in my right side all around my ribs and “ET”.(as I called the implant) was very red around the left corner which jutted right out. It started to feel as if it was trying to push its way out. I had visions of that movie ALIEN where the creature burst out of that guys stomach !! Then the lower back where excess leads were folded and sewn in, started hurting quite badly and got worse.
Through all of this time, the pain in my lower leg, which the neurostimulator was there for in the first place, was absolutely fine. Unfortunately in my case, the cure was worse than the disease.
I had difficulty sitting as the pain in my lower back got so bad.
I then developed what started off as a tiny spot on the end of the scar on my back and it just got bigger. I went to see my surgeon 2 weeks ago and he took one look at it and booked me straight in for surgery the next morning. It was an angioma and was infected.
Anyway it’s 2 weeks today and “ET” has gone home. I am starting to feel like my old self again. AND ......... no leg pain !!!
Neural Plasticity
KStimNo2 Disley66
Posted
Hi Disley66, Are you saying you had "ET" removed entirely and your pain is still gone?? If so, that's amazing! I have read some theories that nerve pain is actually nerve memory; that some trauma causes the nerves to wake up and register pain from a past trauma -only they don't shut off. So I am really interested in hearing about people who had chronic pain that went away.
Disley66 KStimNo2
Posted
Yes it’s quite amazing. It’s actually called NEURAL PLASTICITY. It can last for weeks, months or permanently.
I have actually had a few twinges over the past few days but hey, if that’s all I am left with I for one will not be complaining.
I have just read your earlier post again and cannot believe how similar your post op pain was to mine. The ribs, the lower back (oh that was the absolutely pits) not being able to sit.
I guess some people just don’t “take to ET”..... I do believe it works however, even though several adjustments need to be made. It is a shame that some reps are pretty useless , but it’s a case of try try and try again. They have to do the job they are paid to do.
I really hope things improve for you Darlin. Keep us updated. X
KStimNo2 don81864
Posted
I have a difficult case. My pain is in the right side of my abdomin, just below my ribcage. I had a fantastic trial years ago as part of the initial testing of the device by Spinal Modulation. After getting the implant I had a difficult recovery. But eventually had almost 0 pain.
The pain came back gradually until the stimator only covered about 20% of my pain. Then it came time for a battery change so they put in new leads as well hoping to improve my pain relief.
I am now 4 weeks post-op. I am still having consderable back pain/ache which I thought would be better by now. My rep has made adjustments 4 times but the nerve/side pain is not better yet.
I'm getting nervous that it is not yet working. I have been told the closer the pain is to the spine, the harder it is to block it.
More over, my back (where the leads were inserted) is so sore and hurts if I sit up strait in a chair for very long. But I feel like I should be back to work by now.
Has anyone had similar surgery recovery issues?? Has anyone here had pain in their trunk area that responded to the Axium stimulator?
To those with issues with their rep or not getting the answers they need...demand that they give you a new rep and that you get the info you need to feel comfortable. There are some good ones. And I personally feel no one should put up with any doctor that does not make them feel supported and confident in their care.
KStimNo2
Posted
kept68313 don81864
Posted
Well my wife got the same thing going on. I think something funny is going on. I'm a Electronic troubleshooter. I'm educated in programming of many types, electric, instrumentation etc. well these programmers doesn't know about the pain related to what area like L1 L2 L3 and so on. She was real happy with the trial and Im really mad they trick us
WEDIII kept68313
Posted
Sir, that's exactly what I feel like happn d to me. The trial went great, no pain, could walk normally, no pain meds, it was like a miracle ! When I had the St Jude Proclaim unit installed on 4/7/17, I knew something was wrong. I still had severe pain, could not walk normally, and had to start taking pain meds again. So yes, I feel that I've been tricked ! I'm going to get my medical records and see if I can't find a reputable and competent doctor here.
kept68313 don81864
Posted
e trial was great with great relief. After the fix one it's about maybe at the best 5% If people only new what pain that we go through. Its not right no matter how they paint it up. if the trial work than the permanent should be better. That's what I was lead to believe. With all this talk about getting rid of pain pills and having to take them things anyway. Drives peopled bonkers!
dpilot don81864
Posted
Yes, they pretty much are out of answers but at least they try whatever I ask. But in my case, when I was told to continue with my pain meds but don't do too much activity because it could cause the temporary leads to move out of position. Inactivity and continuing with my pain meds is what reduced the pain during the trial, and that gave me the wrong result. I should have stopped the meds and continued being active so I would have a normal day to compare against. If I did that I would have been able to detect what the stimulation did for me, but by just sitting in a recliner for 5 days and continuing the pain meds, well hell the pain reduced just because of that
ellebe don81864
Posted
Disley66 ellebe
Posted
Australian thing.
Also can someone explain what “the paddle” is, as compared to the leads implanted in the Epidural space as I did and the “ALIEN” to which they are attached implanted in abdomen or back? I have read so many posts on here there that differ from the St Jude one I had implanted 12 months ago (and was apparently the latest)
Also, I was surprised to hear how many programmes there are on the devices. I only ever used one, but then that’s all I needed.
My first rep was lovely but always RUSHED and I never really took anything in that she explained because she was always in such a hurry. Do you know at the very first “programming” after my first op, she rocked in to my room as I was wheeled back from Recovery!! I mean, blimey, I was barely awake and full of drugs. I fell asleep actually. Bahahaha.
Anyway it’s a moot point now because I had the lot removed this time last week.
I don’t discourage anyone from having one but for me it was simply a case of my body not liking it. By the end it truly felt It was about to emulate that ALIEN movie where the creature burst out of that poor sods stomach !
On a better note, my Surgeon explained NEURAL PLASTICITY...... so incredible. The brain can be re-programmed and thus far it would appear this has occurred for me. No leg pain at all since “ET” went home. I am going to be positive and KNOW it will stay this way.
Good luck to everyone and as always I say to you all “DO NOT ALLOW YOUR REPS BE SLACK AND UNCARING” just remember that they want to keep their jobs and if complaints start filtering through to “The Top” always find out the name of the man (woman) at the top and never be afraid to contact them with your concerns. It’s a multi million dollar company and the last thing they need is adverse publicity. These operations are $40,000 plus and hundreds of them are performed worldwide on a daily basis.
If you are not sure how to word a succinct and well set out letter, (I am not being rude here)simply ask someone for help.
Seriously, I have done it. Only a couple of times but the response has been immediate and brilliant.
Sorry to rave on ellebe, I will actually cut and paste this as a general notice for everyone who has problems as there appears to be so many of them.
WEDIII ellebe
Posted
Thanks for the heads up ellebe; I'm attempting to spread the word as far & wide as possible.
Like, why do so many trials work so well, but the actual implant doesn't work at all. And I only became aware of different types of leads recently in my search for information on these devices. I'm sure the rep or doctor would have never volunteered the info !
What a shame that a device that could help so many is being used only, it seems, to make money. A class action suit seems in order, but we've probably signed all of,those,rights away, hidden in the fine print !
WEDIII Disley66
Posted
Good luck & thanks for all the good info in your post. My rep (well, it was the supervisor of,reps in my area) did the same thing right out of surgery, seemed in a real hurry, and actually seemed to take some perverse pleasure in shocking the heck out of me.
And you didn't rave diley66, you probably helped a lot of members here !