Spinal Cord Stimulator Long Term Lead Pain
Posted , 4 users are following.
Hi! I'm just over 6 months in after having a revision/replacement of a St Judes Spinal Cord Stimulator. I had a fractured lead that had to be replaced so whilst in there, my Dr replaced it, added another lead as well, and replaced the battery. As a result I now have been upgraded to the Burst Stim System.
The old system was implanted in March 2012, Battery Revision February 2015, Stim & Battery Replacement to Burst Ststem due to lead Fracture November 2016.
I now have terrible ripping and tearing pain in my spine where the leads are. I can't sit at all (was like the before the surgery) so when trying to get up it feels like the leads are razor wire and are ripping out of me. They sometimes make me feel like I am stuck and cannot move at all or I will tear in half. It's excruciating and I didn't have back pain before this surgery.
Also, the Stim is set at the lowest possible frequency but it puts so much pressure on the lead site in my spine that I can't turn it up at all to get any relief where needed. My spine has also felt dislocated (like a when a ball dislocates your finger) like disjointed where I'm getting this pain since the surgery.
The Rep has no idea what's going on and can't program it any lower, the Dr says site pain is rare but goes away after time, it is getting worse and it's been over 6 months. I'm desperate to see if anyone, anywhere has experienced this? During the surgery I felt extreme pain unlike any of the other surgeries (trial and full previous surgeries) where this is happening.
Can anyone help me or give me any ideas or suggestions please? I used to be able to at least lay and push up on my elbow to eat tea etc. now I can't even do that. I'm getting desperate for answers.
Thanks so much.
Shaz
0 likes, 9 replies
jessica_78456 Brashbuzz
Posted
Id ask to have it removed if it's causing u that much pain , iam due spinal fusion tomorrow I totally declined the stimulator as havnt read anything positive about them . Hope all goes well don't be palmed of with site pain ect
Brashbuzz jessica_78456
Posted
Thanks for your reply
The first system I had in did help a lot. I live over a two hour round trip from where my Dr and Stim Rep meet up for appointments and have an appointment in July now. Usually I can get in sooner so I'd say my Dr is going overseas. He is honestly amazing and has been a godsend I just want to go in armed with some with something this time. I've thought about having it removed but if this is the level of pain I have after having one lead removed and replaced I'm not sure I'm interested in getting it all removed lol! I guess I'll see where I end up. Thanks so much again
dianneg Brashbuzz
Posted
It really sounds like your device has slipped or the leads are in the wrong place. Have they tried to put it in Tonic to make sure where the leads are sending the signals to? It sounds like they are all playing the blame game, you need to get all of the people together in a meeting and hash this thing out.
I have had my St. Jude with Burst in around 2 months now. I would say that I have just started feeling less pain around a week ago. Today hasn't been as good of a day and I went back to bed around 3 p.m. but I have hope that tomorrow will be better.
The trial and surgery gave me more pain than I ever thought was possible to live through. After 2 or 3 weeks the pain started to subside and now I feel like I have a small ray of hope to have a life again. I have been adjusted 3 or 4 times and I plan on leaving it where I am right now unless something changes.
There have been a couple of times that I have turned the device over to Tonic while I am laying in bed. After about an hour of the Tonic I have turned it back to the Burst setting and it feels like it shakes me back into helping me more. Plus it is my way of knowing that the leads are in the correct location.
Please get a hold of your Rep, pain Dr and your surgeon and insist that they find out what is going on. I am getting so tired of hearing about people getting the devices put in, the companies getting paid all of the insurance money and then they just leave you to fend for yourself. Fight for yourself and good luck.
Brashbuzz dianneg
Posted
Thanks so much for your reply. I don't think they've slipped as it's been like this since implantation. Maybe the wrong place? Thanks
I'm getting stimulation but just can't turn it up or the pressure in my spine is too high (at the lead site). It's hard to explain but it's like a vice getting tighter and tighter the higher it's turned up. When on Burst, the longer it's on the tighter it gets (eg each day it gets tighter etc). I have a referral for an X-ray organised before I go to see the Rep & Dr next time (in July). Every time I see the Rep I also see the Dr, that's the way my Dr has it set up. He wants to see all Stim patients when they are having anything done to their stims even if it's just a 2 minute 'is it all ok' after a reprogramming.
My Dr is honestly great. I never thought I'd trust another one, I just know something's wrong here and need info before going to next appointment. I don't think any of them have experienced this before, and honestly if it's going to happen to anyone, it'll be me! Lol!
Yes, thanks for the tip, I've had it programmed for tonic too the last programming and have it only on that now. Had it on Burst for 4 months but the pressure in my back was too much on the lowest setting. I also found it made me so incredibly sad. I don't suffer from depression fortunately and apparently Burst can assist with depression etc as well. It did the opposite for me. My mood completely changed and for the first time in over 6 years since having this disease and disability I felt hopeless & so incredibly sad.
I'm so glad you seem to be getting to a possible positive point with your Stim. I truly hope you keep heading in that direction. I know how great SCS's can be as my first one was great so I am thinking of you and I hope it goes all uphill from here!
Shaz
socksmom Brashbuzz
Posted
I only had medtronic trial in cervical area and 1 year later still in pain with leg weakness and razor sharp pain at lead implant site! Never have gotton any answers.. Oh, yeah breathing problem and bowell changes were also ignored They said go to gastro, I did, not tbe problem. Then go get heart checked out before you come back, heart strong and healthy! So back to square one. This was a work comp case which my Primary Care would not touch. Still looking for answers. The pain management doc said all went well no problems during procedure?? This report goes to every doctor I have been to saying this but this is not correct! I was nauseated, had pinching pain in neck and back and they wouldn't even see me for a followup. It took ER doctor 2 weeks later to call them to see me but they have nothing for me. They make a bundle on these procedures but never heard of none of your symptons after or care. Not Related is the pat answer I ways received..
I have pictures of terrible bruising and swolle rex back or NO ONE would believe!! Someone needs to look into these practices. I'm sure I am not tbe only one...
Brashbuzz socksmom
Posted
I'm so sorry to hear this
I have a huge indent in my back where one of the leads are, I have 2 alongside each other (gap between them). Also have one in sacral spine up the tailbone from first Stim but it's doormant now as never worked properly.
When I flare from my disease which is a lot now so basically if I am on my feet any longer than to the toilet and back each day, I get bruising in the lead site.
I'm incredibly sorry they aren't trying to help you. Even though last time I spoke to my Dr he said the pain can occur in very rare instances and should ease I have been so frustrated as it's not easing in fact it's getting worse. I am so much worse than ever and cannot do anything at all. I was bad enough before but now I am totally unable to do anything, even prop myself up to eat. I do know when I see him in July he will try to help though, I just want to try to get some possible ideas before seeing him as I do believe he is at a loss as he is such a good surgeon I don't think he has experienced this before. I feel awful seeing so many fobbed off like they are. It breaks my heart. I wish I could help you all in some way.
socksmom Brashbuzz
Posted
I am sad to hear your problems and pain from a "minimal" invasive surgery. Bless your heart. I don't think narcotics can do anymore harm than these things! I am so angry. I never had a back problem just RSD in arm hand which I did need help but if I was told I could have MORE pain on top of that, I would not have done it. SCS was supposed to relieve pain I have not make another! If I were you I would have it all removed because you really don't have any idea what it will do long term. Narcotics never gave me more pain after I took them. Just saying.. experts did not know much about what "happened" to me or a lot of orhers. Hope they can get you somewhat back to a decent way of life. I didn't get your age but what you describe is not for anyone! May my prayers for you bring relief and some hope. Excuse my frustration.
socksmom Brashbuzz
Posted
When was your first implant if I may ask. I can't believe the shape you are in! We are not being told of the things that could truly happen. My nurse and doctor acted like it was THE way to go instead of meds. Still very upset...
socksmom Brashbuzz
Posted