Spinal Cord Stimulator Failing?
Posted , 6 users are following.
Hello,
Has anyone had a stimulator that has failed them? If so, how did you know?
I got a stimulator over a month ago after a "successful" trial. The leads were placed to help the CRPS in my torso/trunkel and my shoulder. After the first week and a half the shoulder pain returned with a vengeance. The pain is worse now than before I received the implant. My hand stay in a cripple like position 98% of the time. The pain in my leg/ankle/foot is also worse. My foot also looks crippled a lot and when trying to walk, I'm almost on my ankle. The incision pain is still there...its very tender to touch around the battery pack. When I try to sit back its like the battery has prongs on it that's digging into my back. My symptoms of burning and sweating has gotten worse. I now have the burn where the battery pack is.
I'm officially giving up on this thing!!! I cry more everyday now than before they put it in. Its very frustrating because everyone has all these good things and high hopes with it and I'm living in Hell! The pain is so bad that I have arrhythmias now (which isn't good)...actually about 300 within the last month! I want this thing out NOW!!! 😢😢😢😢😢
0 likes, 19 replies
Ru55ell ukila1219
Posted
Hi Ukila,
Firstly I'm sorry to hear things haven't settled down for you.
I've had a DRG stimulator fitted around 4 years ago. The DRG stimulator is essentially the same kit as an SCS stimulator but delivers more localised stimulation.
Since I have had electrodes inserted for my left knee, it triggered a spread in my CRPS and a year after I had electrodes implanted to cover my right knee. These electrodes failed and I had to have them replaced the following year.
The battery then went flat and I had to have that replaced the year after, and now I have just been told that it looks like my original electrodes have a break in the wire so I'm waiting to see my surgeon to see what he can do for me.
From what you have described it could be down to overstimulation. If I have my stimulator turned up high then I do get pain around my battery site which doesn't help, but by tweaking my stimulation settings I can find a best alternative.
Have you been in touch with you pain team and surgeon to see what they say? There is always the risk with the surgery that CRPS will spread to the sites, which I am crossing my fingers for you that this isn't the case.
A high level of stimulation will cause me to have leg twitches and muscle cramps which affects my walking as my legs don't behave as they should do.
I would say only being a month post op is still incredibly early, the advice I was given was to avoid bending stretching, driving for 8 weeks and then after that to only do light things as it can affect the implants.
I would say for you to get in touch with your pain team and ask for them to review you to see what they can program wise and see if they can modify your stim settings.
I hope my experiences have let some light into the fact that not everything does go right, but you should always keep in touch with your pain team even if only to ask them the questions to put your mind at ease.
CRPS is a horrible condition, and I wish you all the best in resolving your situation, it will get easier with the stim but it does need a while to settle down, but please talk it over with your pain team.
All the best
ukila1219 Ru55ell
Posted
Thanks for your input Russell! I have been in contact with my Pain team since I started having issues. They have tweaked the stimulator several times still no relief. My stimulator isn't turned up high because I can't stand the vibration from the stimulations. The leads are only to my shoulder and back there's nothing for my leg. I'm not sure what's going on but its overly frustrating. I had high hopes of being able to deal with my 1 year old since I missed out on so much due to the pain...but that doesn't seem possible.
I hate that you had to endure all of the extra stuff with your device. I think I would have had them to keep it out if I went through all those malfunctions!
Thanks for the insight
Ru55ell ukila1219
Posted
Your welcome Ukila, can they not change the frequency of the stimulation? When I get reprogrammed at clinic they can change the pulse width and frequency which lessens the vibration effect to a point where it feels not like a vibration but a light tapping effect.
I know how discouraging it must be for you especially when you were looking forward to getting your life back. At the start of my stimulation journey I was looking forward to getting my life back and reducing the pain meds I was taking. After the stimulator was implanted and I was unsuccessful at reducing my pain meds I was told the stimulator was there to help and not replace my meds.
It might seem a long journey at the minute, but as they say every journey begins with a first step, and you have taken those first steps, it's just a case of waiting for the stimulator to settle but to keep in touch with your pain team and get as much help from them as you can.
You will get to a stage where things are better, it's just the frustration of the time it's taking to get to that stage.
I know what you mean about getting them to take things out after the problems I've had but when my stim is working it really does perform miracles. It's just making sure the miracles last now!!
ukila1219 Ru55ell
Posted
Russell,
They have adjusted the vibrations to barely nothing. Its not that its the stimulations are causing problems, they have been adjusted up down and mid. I'm really beginning to feel that its not going to help the area because my trunkel area has been in less pain on the CRPS side since the device was implanted. My shoulder got relief for a few days, then ALL trouble broke loose! I've changed the program, they've tuned the device and still nothing. I asked did the lead move, they checked and it hadn't. I been researching and found that several people had successful trials but once the device was implanted it failed to give the expected relief. Many had similar situations... Like it helped one area but not the other. Or didn't give absolutely no relief. I know the device my be some people saving grace but I feel like its doing more harm than good with me.
I'm not losing hope all the way around but I am losing hope with the device. I'm going to opt to take it out because I read that the longer its in scar tissue develop and make it hard to completely remove all of the components.
browneyes58 ukila1219
Posted
Dear Unklia,
I'm so sorry this has turned out this way. We have more than enough pain with CRPS without added pain.
First, you need to call your dr and let him know what's happening. Second, do you have a controller to turn the SCS down or even off?
I don't have a SCS, nor am I a dr, but it seems if you turn it off(either you or your Dr) and the pain is still more than before the surgery, I'd say either the CRPS has spread or made it worst by the surgery or the lead wires may have moved and pushing on nerves.
You need to call and see your Dr ASAP.
Keep us posted and know I'll be praying for you.
Browneyes
ukila1219 browneyes58
Posted
Brown eyes
I have been in contact with my doctors about it. They have reprogrammed it several times. I use my controller to control the programs. But because I'm a Worker Comp patient, I'm afraid to just turn it off( they have already been giving me pure you know what).
myra_2901 ukila1219
Posted
My nevro rep has said that CPRS is one of the hardest to get the programing right. and can take weeks. It may work one day then will need reprograming again. i am 15 days post opp. CPRS in hand arm and shoulder/neck. I have had a tiny bit of succes so far with a little tolarable to breezes and a cold wash over the hand. Dont forget that the surgery pain will be adding and that has 3months min recovery with a total of 12months to full recovery. Give your body a chance to heal.
ukila1219 myra_2901
Posted
Hello Myra,
I have a Boston Scientific device. The healing time supposedly is 6 weeks which I've met. No one told me that the trial would be better than the actual implant. Wish they have because I wouldn't have agreed to this crap. I'm pure miserable!
myra_2901 ukila1219
Posted
the innitial healing time is 6 weeks, then you have a 12 weeks to all restrictions lifted. the leeds and battery take 12 months to scar in. during the scaing in time if you are ot carefull you can stil move the leads. when the leads move this well affect the success of your implant. The nevro does not have the buzzing so it is much more pleasnt. in australia the nevro is the prefered device for CRPS. due to the nature of the condition and that the leads have better contact points coverage. I would ask for an extra to make sureyour leads have not moved. this is crittical with the boston and most scs's.
ukila1219 myra_2901
Posted
Myra,
This is the first I've heard of the lengthy healing process. I'm here in the USA. They have checked the leads and they are still in place.
andrea11745 ukila1219
Posted
Hi ukila
I'm sorry to hear you're going through all this. As I think you might remember I'm 6 weeks post op from SCS for left leg (thoracic spine laminectomy),and 3 weeks post op from cervical SCS for left arm, and I as well am struggling some. The pack for second site had to be put in my left flank over my lower ribs at the back and is causing me significant discomfort but was told this should settle down in a few months.
I was also told , at its best this device will only offer 30-50% pain relief with CRPS..I do hope you were told same as I can only imagine your disappointment if you hadn't. .was also told that 30% fail even with a good trial. I also have been told by company RN's (I have a medtronic device) that programming and fine tuning with CRPS pts can take 6-12 months..has anyone mentioned high frequency stimulation? I'm. Not sure if it's unique to medtronic but it's supposed to be a program that gives you high stimulation without feeling the sensation. This is what I'm aiming for as I find the high intensity stimulation for aggravating and have worried the surgery has spread CRPS to insertion site as well....please.do ask your pain team about it..as well brown eyes is right, this is just another tool in our tool box to help along with the meds. It's not a be all and end all..
Please hang in there. We are all rooting for you and for this device to help.
Keep us posted.
Andrea
ukila1219 andrea11745
Posted
Andrea,
I had a good bit of relief from the trial but this implant is something horrible! I was aiming for the same kind of relief but instead things have gotten worse. On yesterday my body began to get extremely hot and burning from the inside (hotter than the normal CRPS burn with a electric like feel). I woke this morning to severely bruised/burned skin (wish I could post a picture). I turned the device off after noticing the burns and I'm still having the strong stimulations in my arm at times.
I'm not sure what's going on but its becoming highly overwhelming. They have tuned this thing several times. Like you I hate the feeling of the strong stimulation so I would run it on a program I could barely feel. I check the remote Everytime I feel a strong stimulation and it's still off.
Thanks everyone for your support!!! I'm not giving up the fight but I am giving up on this device. Hopefully I can get it removed next week.
myra_2901 andrea11745
Posted
christyl87594 ukila1219
Posted
Hi, my first stim failed 3months after implantation. I then wAited 6 months before I could have it explanted and my new one implanted at same time. The new implantation has never felt right in my upper back. It's sore and feels like something stabbing me and it's been nine months.
ukila1219 christyl87594
Posted
Sorry to hear that Christy! Have you not tried to get it explanted? I have I sticking feelings in my back too. This thing is IRRITATING! I'm hoping to get it removed next week. I woke up this morning severely bruised after a night of a electrical burning feeling. I have turned it off until I can see my doctor. I have been shocking people for two days now. This is sad. I don't understand how something that is supposed to help is causing so much pain!!!
andrea11745 ukila1219
Posted
Hi Ukila
How are you now? did you see your doc about getting stimulator removed? I'm so sorry you're having a tough time and this awful night you put in with the burning and shocking people is very concerning.
Please let me know how you're doing.
Andrea
ukila1219 andrea11745
Posted
Andrea
Sorry I'm just replying, I've been going through the BLUES! I'm currently awaiting diagnostics on my device. It's still off and the bruising hasn't went away. The pain is back with a vengeance. My ankle/foot is so weak that I can barely walk. My legs gave out the other day and my teenage daughters had to drag me inside the house(very emotional).
I'm a fighter and no matter how bad things may get, I'm going to continue to fight through this.
Ukila
andrea11745 ukila1219
Posted
Oh Yukila! ! I'm so sorry!! that must have been awful for all of you.💖! !
I have grown daughters in their 20's..how come it hurts us so when they have to go through those things and see us like that?? I'm sure it was very emotional. BUT , I bet those girls have seen your example and are fighters too and they are strong and am sure no matter how hard it was to see you like that they would do it again in a heart beat if they had to for you.
Know you're not alone. I feel like I know exactly how you're feeling, and am here if you need to chat. You are more than deserving of some blue days with this disappointment. We put so much stock in these procedures because we wait so long and are so hopeful because we've been through so much..if I can figure out how to private message you I will (lol), but again, I know I'm not alone in saying you're not alone hon..hang in there..
Andrea
ukila1219 andrea11745
Posted
Ye!!!! Very emotional! But they remained calm until they got me inside then both of them broke down crying. They're tough little cookies but it hurts them deeply to see me like that. My youngest daughter told me she's afraid she's going to lose me. I reassured her that I'm going to fight this and they're going to help me defeat this devil!