Spinal Cord Stimulator
Posted , 146 users are following.
Has anyone had a spinal cord stimulator,it has been one suggestion for my husband who is still suffering after 4 years after his first surgery, he has had a further op two years ago and is still suffering immense pain, has weakness in his leg and finds walking difficult and now needs a stick to walk with. I am hoping someone has had a spinal cord stimulator that has had similar condition as my husband because as I understand it it is only a minor op to implant. I think the other option is fusion which I have heard horror stories about, especially as he doesn't seem to have success with major ops. Thanks
19 likes, 888 replies
Mtndew khi
Posted
I have 7 spinal cord stimulator implants over the past 15 years. All have been Medtronic units. I have loved them, when they worked, because they do help with pain. I had two fusions at L4/L5 & L5/S1, and the surgeries failed to help. So, failed back surgery, nerve damage, fractured vertebrae and scar tissue, I was left with severe back pain, and pain and numbness in both legs. It is very hard to walk when you can't feel your lower legs and feet. The SCS, made that possible with the tingling sensation that it gave me instead of the pain and numbness. It was awesome! DO NOT LET THE IMPLANT A PADDLE LEAD!!! They told me it was the best type of lead, it would be the last one you would ever need. In other words, it's a "lifetime" lead! The lead lasted less than 4 years before the contacts went out. I guess I should elaborate on the lead just a little bit. They have to remove a small portion of bone on the vertebrae that they are going to put it between. They call it a paddle, because it is flat, and when it is in position on your spinal cord/durra, it wraps around and forms into the desired position. This is great, when it works, because you get the ideal position for the leads/contacts for stimulation and pain relief. However, when it fails, after scar tissue has formed on the lead, and in the spinal canal, the lead can not be removed without taking out a large portion of vertebrae to allow for access, and the possibility of tearing the durra or paralysis. So, it is a lifetime lead. Now, back to the stimulators. Every unit that I have had has failed due to lead failure. The unit I have in now was implanted February 2015, and I have had nothing but problems. At first, I was having a severe stabbing pain in the center of my back at the location of the leads. Of course, it couldn't be the unit! They sent me for test after test and everything came back negative, but still refused to say that it was coming from the unit. The lead on the left side kept loosing contacts. They kept reprogramming the unit trying to make up for the bad contacts, and then more contacts would go out. Then they tried to usecontacts off the right with a contact on the left to make it work. The whole time, the unit continued to be harder and harder to program for their tech, as well as trying to adjust by me. While trying to adjust it, the left side quit completely, and I could not get it to work. When I rolled to my side, the stabbing feeling in my back felt like a ball bat. I cut the unit off until I could see the doctor and Medtronic. Finally got in to see both, and when Medtronic tech tried to check unit, I got a shock at the generator site, and at the lead site that felt like someone plugged in an extension cord and put the other end against my backside! They found out that the connection at the generator had came loose, allowing fluid to get into the generator and short it out on the left side connection. I have went online, and have done a lot of research since this, and this is not the first time something like this has happened. There are a lot of things that can go wrong with these type of system's! Do the research on your doctor, make sure they know what they are doing. Check out the system's and find out everything you can about them before you do anything. When I started, Medtronics was the only one out there and that is why I stuck with them because of their knowledge and types of system's. However, I did not research the paddle lead, because it was new, and there was nothing out there about it. The percutaneous leads are the way to go because they can be removed and installed a needle, just like getting a shot. Please, do your research!! The SCS are great for pain relief, but the effects that they can cause to your back and body may be worse than the problem you have now! I'm having mine removed as soon as possible and will be looking at other options for pain relief. I not only have low back and legs, I now have mid back, sides, and paddle leads on my spine that can't be removed that I am afraid that if scar tissue forms around them any more, or if the remaining wires get caught on something, possibly in an accident, I will be paralyzed for the rest of my life.
JackSparrow Mtndew
Posted
Thanks for all of the information from your personal experience. I was thinking that paddle leads were better but from the sounds of it , no thanks. The percutaneous leads also become trapped in scar tissue don't they? I realize they are easier to install but how are they anchored? I have not been able to find out that information.
glxpassat JackSparrow
Posted
If your really active then the percutaneous leads have a high probable rate of moving out of place. I just had my permanent Boston Scientific implanted 2 months back, and I'm really happy having the paddle leads. More painful of a revovery, but worth it in the long run. During my trial, the leads moved leaving me in terrible pain. Honestly how most people getting the percutaneous leads don't have movement is crazy? I however hope I dont have problems later down the road as mentioned earlier about paddle leads causing huge issues; if lead failure. Basically you need to ask yourself how active you are will base it on what leads to get.
paula170366 glxpassat
Posted
Hi
I'm 5 years on and implant working reasonably well. Just a charging issue with hardware you plug in. The plastic paddle you hold against yourself with the box you charge up on the other end. This is the issue here. Have contacted my Nevro rep and is going to change it. It's something to do with that. Thanks anyway.
Hope all goes well with you
JackSparrow glxpassat
Posted
glxpassat JackSparrow
Posted
Me being an extremist, I had to go with the paddle leads. Either way you cant bend, twist, lift after the surgery. I'm only 2 months post and still taking it really carefully - so once I hit the 6 month mark, i can get out and snowmobile... This season I will have to be careful, but I'll simply be elated to simply get out and ride. For me, I'm more creeped out with the battery. Funny I had a big long Intramedulary nail inside my tibia with screws, which didn't bother me a bit. But the battery grosses me out. I simply try not to think about it, or touch. I honestly believe I'd have the percutaneous leads moved already, and I'm trying really hard, but just putting my jeep into reverse yanks on the back. So for me it was the best solution.
paula170366 JackSparrow
Posted
They're both anchored but the trial one is only in for a short time. When you have the real one fitted you will still have to lay off a lot as your body needs to accept the wiring and body fibres and scar tissue bed it in further the longer it's in there so you need to be relatively inactive. The reaching and lifting are the major things you won't have to do. It's been worth it but is not a total cure just reduces your pain level and area.
kathy07828 paula170366
Posted
H Paula! That's reassuring. My new pain Dr has been suggesting the Nevro for me. I've read from people on this site about leads moving easily, which had me very concerned. I also get relief from my chiropractor as he can usually get my pelvis stabilized a bit despite my fusion, and this helps a great deal with my pain level and ability to get things done. I was afraid that I wouldn't be able to get chiropractic adjustments anymore if I got the Nevro, but my Pain Dr, who will also be my surgeon assured me that I can.
joseph67249 khi
Posted
HI,
I had my trial of a sinal cord stimulator for thorocotomy pain sydrome. My left chest was entered and basically using a scraper, mutiple scaples and scissors to free my entrapped lung. I have a high tolerance for pain but this was horrible.
I have a meeting with my pain doctor the first week of August, 2016. Due to over eight surgical procedures and having the test device turn on and I lost all sensation from my abdomen dowm, I am going to not have the permanent one implanted. It is just not for me. I see people on here having a lot of complications and did not like sitting in the Surgi-Center's waitning room see the corporate salesperson sign in next I see her in the operating room. Very unprofessional
cynthia70714 joseph67249
Posted
Joseph67249,
I agree, when I had my revision surgery because the battery was protruding out of my back and as I'm in the operating table I see the representative from the company in scrubs, I didn't know they allowed that I am a woman and I don't want some strange man while I'm naked and they are flipping me all over the place, talk about feeling uncomfortable, i am still in pain and they what me to turn on the stimulator so I will feel the sensation of the stimulator which feels like both your legs are asleep, but I have bad nerve damage on my left side so I don't feel the sensation like I do on the right side, but it made me feel a lot worse, the pain that night was unbelievable and unbearable and they tried all if the different programs why can't they get it through their heads I'm not a Guinea pig, I'm tired of them thinking this is going to work. But I do know how you feel.
I hope you find some relief I know I'm not going to
Best of luck keep us updated
Cynthia ( Cindy) USA CT.
glxpassat khi
Posted
Finally my pain specialist mentioned the SCS, and to look into it. I went ahead 6 months later, after playing all the games that the insurance company wants you to do beforehand getting the trial 3 days after getting it, they had to pull it as the lead had moved, and was pushing against a nerve. Thinking I wouldn’t be able to get the permanent because the trial was a failure. Well 4 weeks back I received the permanent one. I was referred to a different doctor because of my active lifestyle. She ended up doing a laminectomy with the bigger leads (glad I went this route). I’m simply still in shock with how it’s changed my life! I think because the type of nerve damage, it has worked well for me! I still have to take some pain meds, but when I do, I’m at 100%. The wonderful thing about the Boston Scientific, is I have it programmed at the high frequency, so I don’t feel anything like NEVRO, but I also have other programs, so depending on my pain, these different choices are amazing. Sometimes I need to have the jolting like feeling; which for me is like heaven! The nice thing with the Boston Scientific is you can do the program that is silent, or one that is more pulse-like, or an electric stimulation – which offers a consistent flow. My programmer with the company is amazing, and can essentially make it do anything you would like to assist with “YOUR” pain.
The battery doesn’t need charged but every couple of weeks; which for me is a plus. Yes I can’t have MRI’s, but from my research, you can achieve CAT Scans and such that will generally show needed problems which MRI’s show, simply based on today’s technology.
I have the implant placed a little higher, as I was asked questions like where do I wear my jeans and such. Because I wear jeans lower, she placed it a little higher. I can still sleep on my right side; even though it’s placed on my right. I can’t begin to tell you how it has changed my life. If anyone has questions about things please feel free to contact me!
socksmom glxpassat
Posted
Bungle66 socksmom
Posted
Hi Daryl, I had a lot of bruising after my Medtronic trial. I got my external lead hooked up on a towel rail and I think dislodged everything. My trial had been going well up until that point but there after I had nothing but problems. I went on to the the full implant but it never worked, then they attempted a very new procedure called a dorsal root ganglion stimulation but I had too much scar tissue for that to even be completed. I am now awaiting another permanent implant for the paddle leads done using a much more invasive procedure in my upper spine. I think they will do a laminectomy to get the leads into place. It's all scare stuff. God bless you!
glxpassat socksmom
Posted
Bungle66 glxpassat
Posted
glxpassat Bungle66
Posted
I've only had the permanant in in for 3 months. My accident was 3 years ago breaking my leg badly and tearing my lumbar disk (that was finally found on MRI). Bexause I had extensive muscle, tendon nerve damage (high energy breaks) it can take close to 2 years to heal. So after 2.5 years I was officially diagnosed with CRPS II. And you are most likely correct with the least amount of surgeries to the back the better (I had none prior) as the scar tissue can effect how the SCS sends signals. I have a blog and youtube videos if interested?
Bungle66 glxpassat
Posted
Yes I am interested in loking at both your blogs and the videos. I have sadly had 9 operations in total now including my failed SCS's. This next one is really my last hope until they figure out some way of elimenating the scar tissue issues.
Bungle66 glxpassat
Posted
Thank you, I'll keep an eye out!
glxpassat Bungle66
Posted
This will keep ya busy for awhile! Are they putting in more stims, or a different brand? I feel soooo bad for ya! I've been in so much pain for 3 years. I was an extremist person and busy... Wakeboarding, riding dirtbikes, quads, snowmobiles, you name it. Riding is my world. When i wrecked my whole life changed!! I felt like a wild animal stuck in a tiny cage...it's an awful feeling. I know im still gonna have bad days, but ive also been given good days, which i didn't have. Keep your chin up!!
Bungle66 glxpassat
Posted
Hiya, your good days excite me!!! I haven't had many of those since 21st December 2010! My previous stims were Medtronic but I think (not 100% sure) that the next one will be the Nevro RF10 with paddle leads. I'm having to go to one of the teaching hospitals here to have it implanted as it's done very differently from my previous two attempts. I might be waiting upto a year for the surgery. That's not good because as I go along I keep coming up with reasons why I shouldn't have it done. Truth is though that I am in sooooooo much pain that I think I will go ahead. I cannot believe that at 49 this is as good as my life is gonna get. I am soooo pleased that for you it appears to have been a success. I think there are many success stories but those of us on here are by and large the failures. I hope you are back on your snowmobiles this winter. JUST BE CAREFUL!!!
glxpassat Bungle66
Posted
You would think with such medical advancements, they would be able to figure out how to overcome the scar tissue problems; which causes the SCS to not cover the needed areas?
If it were me, I'd probably say f_ _ _ k it lets do it! Only because being in terrible pain every day is horrible, and theres a chance.
The one thing is hopefully you get a great programmer!? I think that can play a small role in getting good coverage!? I'm thankful my guys from Boston scientific are awesome! And hopefully yours are too!
Bungle66 glxpassat
Posted
Hi and good morning. I have got your blog links. Thank you. Fascinating reading.I'm just starting now as in too uch pain to sleep! Thank you.
glxpassat Bungle66
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Bungle66 glxpassat
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Hi B. No idea why. I found your blog and the vids so helpful and I'm sure lots of others here would as well. I hope you are feeling better? Take care and regards Graham
glxpassat Bungle66
Posted
I kinda posted that generically hoping a mod would see it. I just got done sending that question to a moderator. No way did any of my links break the rules of this forum. No adds, no inappropriate material. Just my video blog, and web blog. I'm glad you were able to read\watch them. I did it in order to help others because there simply isnt enough available out there.
I'm much better today. 2 days back I was in so much pain i couldn't get out of bed. Yesterday my muscles were exhausted. I forced myself to work out, but I thought I was dying and couldnt do my whole workout, even days i don't feel well I force myself, as I'm hoping once I'm in shape and have been working out awhile, it will help with some of the pain? I've been working out for 2.5 months every other day. So proud of myself! I'm already seeing my poor atrophied muscles perking up😋
Hope you are doing well friend! Please keep in touch.
Bungle66 glxpassat
Posted
I would love to get back to some level of fitness. One of my mates told me this summer that it looks like two threads of cotton hanging out of my shorts, my legs asre so skinny!!! Cheeky so and so! I'm really hoping that my pain levels will start to fall once they get this new SCS inside me. I am concerned about the laminectomy needed to place the paddle leads but I am also hopeful that they won't move around so much! Part of my previous problem was lead migration. I have such bad back ache as well as the nerve pain in my legs I really don't know what to do about it. Still it could be worse. I am still mobile. Going to Ireland for a couple of days holiday next week. I dread it but I am also looking forward to the change of scenery. I share your worries and concerns about being able to go back to work in the future. I miss my job soooooooo much but who wants an emplyee that can work today but might need three days off to recover? Lol. Here's praying for all of us. It will get better. One day there will be a permanent cure to our issues. Take good care G