SPINAL CORD STIMULATOR SIDE EFFECTS
Posted , 114 users are following.
have had s c s. almost 1yr. have had 2 major infections 11 days hospitalisation & had to go into theatre to have wound opened and flushed out with antibiotics. also had to have first implant battery replaced as it was in wrong angle and wouldn't charge!! have had spinal fusion and failed back syndrome. SCS was only thing hadn't tried. got relief on back pain from beginning but find it really hard to walk now.....my legs seize up and i have to stop every few steps....always in pain when i try to walk. Have also felt pain and limitation in my arms especially when i try to lift arms up ie drying my hair etc. Have trawled internet to find anyone with similar experience no success....my surgeon & reps say my NEW symptoms have nothing to do with the stimulator i don't agree.....can anyone relate to what i'm going through....or am i just the only one...please help my partner who is lovely feels im not giving scs a proper go....he doesn't know how much pain my legs are in. Pat
10 likes, 311 replies
ellebe patricia65203
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socksmom ellebe
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raines13 patricia65203
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anna01683 patricia65203
Posted
Hello everyone. I'm in desperate need of some advice/help.
I got diagnosed with CRPS in my foot back in 2010 as a result of an accident. Too long of a story to tell but I went 5 years without treatment, started getting treatment again only a few months ago.
When I saw my pain dr (Dr 1) the first time, she immediately recommended a DRG stimulator. I asked if I could do other treatments first. She then sent me to another dr (Dr 2) in the office for nerve blocks. When I saw Dr 2, he immediately started talking about the DRG. I explained that I wanted that as a last resort. So we arranged nerve blocks and PT. The first block did nothing and the second made my foot feel worse. When I went to follow up with Dr 2 who did the NB, he started rattling on about the Abbott DRG. I told him I read about complaints people who have had the procedure done. He said those people are outliers and it works. Then I said bottom line, I'm only 34 and extremely apprehensive about anything going near my spine. He told me that I'm not looking at the right research and if I'm not willing to get it done, then I'm not in as much pain as I'm saying. I got so angry I burst into tears. When I said my regular pain doctor, Dr 1, recommended a trial where the wire would go through the calf, Dr 2 said that it's not going to be as effective as the DRG so I'd be wasting my time. My friend who came with me asked if there were studies we could look at other than the ones provided by the manufacturer. He said, very sarcastically, no they do the research, that's how they find out it works. He spoke to her like she was an idiot. I couldn't speak for the last 10 mins. I sat and cried.
I'm feeling forced to do a procedure that I'm not comfortable with... I currently take Percocet 10/325 and Neurotin 100mg but my pain never drops below a 6.
I'm scared and frustrated and don't know what to do. Please help.
socksmom anna01683
Posted
What an ass that doctor eas. I thought she had a very intelligent question there ad I feel like studies are biased..
Unless you are in wretched pain and cant go on I feel you would be wise to forgo SCS. It is a Godsend for some but there is a chance you could be worse off and I know they won't exlplain that to you. I would feel safer taking narcotics if it keeps you moving. Once you get tissue damage around nerves that is painful and how do you fix that. Many questions still noy answered about these things. I just wouldnt tell any o e to go this route unless you are absolutely desperate to the point of taking chances you may be worse. Good luck to you...
NevroDisaster patricia65203
Posted
I am having a very bad situation with the Nevro.. Pain is travelling from my buttocks to my foot to a point I can no longer walk.. Neurosurgeon claims it was underlying..
Love to talk with you. Hope to hear from you soon.
Jenn
candy_32315 patricia65203
Posted
I have had 2 stimulator in for years and never had a infection!! But the only problem I have had over the year is with my bowels where it has cause my pelvic floor muscles to tighten so much it has pinched off my rectom. But I went threw physical therapy and now I have to shut it down for 2-3 days and have a bowl movement then I turn it back on !! But now I’m having problems with having pain in my legs and feet after setting or getting out of bed to where it hurst so much and is hard to walk !! I have to hold on thing to move from room to Room !! But I I think or hope it’s coming from my pain in my back !!
candy_32315
Posted
foxy32222 candy_32315
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Hello Candy,
I just had my Stimulator put in for my lower back and left leg. It's been two weeks now, and I have an appointment tomorrow because I am not getting the relief in my lower back, I feel the vibration in my right leg, not my left in which that is what I wanted. I am assuming that I need my remote programmed, due to the fact I only have one, but the trial did do good for me and that's why I had it implanted hoping for the best. My issue is since I been on this site, all I hear is horror stories. I hope things get better for me and things get better with this stimulator. However, when I needed help I felt all alone, it is taking a week for me to get help, interesting. You give me hope :-) But what is a pain pump, and how does it works?
Thanks for your reply.
foxy32222 candy_32315
Posted
You mean to tell me that the scs makes it hard to have a bowel movement?!! I already have issues with that and I take meds every 2-3 days to have one, but had no idea that the scs is a cause also. My pain meds make it hard to go already...WOW! What is it with the Pain Pump? Do you use it as an add-on to the scs?
rachelle_09848 patricia65203
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foxy32222 rachelle_09848
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Hi Rachelle,
I feel the same way, "Alone" It's been 3 weeks Monday, and since having scs I was supposed to go to my Dr. in a week, to have my remote control programmed, but the program person did not show up. Ok, I called and got another date to be programmed, 1. I did not receive a charger for the battery that's in me, and when I arrived I was told my battery was low, however, he tried to program it anyway. 2. I received the charger after being questioned if I lost it, that p****d me off! Why would I lie? Okay, after being programmed, at least I thought so. Come to find out, it did not take. I called again to informed them of this and again was questioned why it was not programmed like it's my fought it's not there. smh...Now again I have to go back to the Dr. office to get programmed again. It's been an experience to me, and feel alone after they put the scs in me like they really don't care, everything after is like my fought. I hope soon they will get it together, and make this thing do what it's supposed to do.
kris29211 foxy32222
Posted
Hi foxy3222
My husband has had the stimulator since Oct 2017. Don't give up o. The programming! It is the reps job to continue to reprogram it until you get some relief! My husband has several programs on his right now to try to get the best possible relief! Our rep has met us outside of the dr office to help my husband! We have his personal cell number to call him. They should have told you to that you don't want to let you battery die. Three times and the battery has to be replaced and the insurance companies frowns on paying for that if it's your neglect or so we were told!
albert08798 rachelle_09848
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foxy32222 kris29211
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Thanks for your reply Kris29211... You said you had to replace the battery? The one inside? Or the charger? And how can you tell if it's not working right? I was told once the charger is charged, the light will turn green, but I also was told that when I put it on my battery it will beep until it's not, letting me know it's charging. Today I charged the charger, took it off because it turned from yellow to green. but I didn't hear the beeping, maybe it did and after so long it stopped, but when I put it on me, I couldn't tell because it wasn't beeping, so I still have it on and hoping to hear it beep to take it off. Please advise? And thanks again for the reply :-)
kris29211 foxy32222
Posted
I am talking about the battery under the skin that you use the charger to charge. My husband has the Medtronic stimulator and charges once or twice a week. The battery pack you use to charge with isnt a big deal but also need to be plugged in to charge so he can charge his battery in his lower back! I think you need to meet with your rep again they should be able to help you with all these questions. I know it is frustrating but they are there to help you through all this. I hate that they put a device in a person and then don't do a good job explaining how it all works.
kris29211 foxy32222
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But yes the battery under your skin you need to charge and not let it die! My husbands has to be replaced if he let's it die three times. The rep said they have to be replaced every 3 to 5 years normally.
foxy32222 kris29211
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Hi Kris,
You are right, these reps try to make me feel like I am tripping "NOT" that is what makes me mad, so much I had to put in check. And since I found this site and read all the different issues people have, it has been an eye-opener and a help.
Thanks for your reply! I will keep the charger charged...:-)
foxy32222 kris29211
Posted
Hi kris29211,
I received several programs last week, so far so good. I have 4 now, but wondering how many can I have? It keeps vibing my legs that I don't need in my right leg. Another thing...not to be so invasives....when doing the do, and that time comes, my simulator rares up in my back, is this normal?
Cajunbella foxy32222
Posted
The Best thing I ever did was, REMOVING my SCS!!! I Highly recommend that one talks with their Pain Management doctor about doing the nerve blocks and then to series of RFA'S-Radio Frequency Ablation. BEFORE having a SCS implanted.
Cajunbella foxy32222
Posted
The Best thing I ever did was, REMOVING my SCS!!! I Highly recommend that one talks with their Pain Management doctor about doing the nerve blocks and then to series of RFA'S-Radio Frequency Ablation. BEFORE having a SCS implanted.
foxy32222 Cajunbella
Posted
Hello Cajunbella,
What exactly does nerve blocks and then to series of RFA'S-Radio Frequency Ablation do? Do you have to have surgery, if so how long in the hospital, and is it called Major Surgery? How long is the healing after, and is it for disk problems?
Cajunbella foxy32222
Posted
I had a total disc replacement 12yrs ago w/bone graft and fusion at the L5-S1. That gave me tremendous relief for about seven yrs until I developed some arthritis in that area. Because of all the yrs prior and not doing anything about the nerve pain, I developed some serious nerve pain! Fast forward. After every attempt to ease the nerve pain, I was told my Neuro Pain docs that I was a candidate for a SCS. In 2015 I had it implanted. It felt like the answers to my prayers, and it was for about 7mos. Then, for the next 10mos I was in tremendous pain!!! The battery was pushing on the area of where I have new development of some Severe Arthritis in the Facet at the L3-L5, which is the nerve path of where the battery was located. They relocated, and still no luck. I could also NEVER get the SCS regulated in order for it to not over stimulate me in one area and not another. I wanted it out and so they did. Best thing ever!!!
The Nerve Blocks will help determine weither or not the pain doctor is hitting the right area. The relief may only last a day but if it gives you at least 80% relief during that time, then it was successful. This is an out patient procedure. Next, is the RFA. It's an out patient procedure as well. I would say that 98% of my nerve pain gone and it has help my Facet Arthritis Pain about 80%. I'll take those numbers any day of the week!!! Motto of this lessons...inquire about nerve blocks and RFA'S before putting a SCS in your body. Based on what I know now, I would NEVER AGREE to put one in or NEVER encourage one to have Implanted!!! I hope this helped.
foxy32222 Cajunbella
Posted
WOW!!!
You really gave me some options to think about. I already have the SCS, so far it's working for me since I got it programmed. I only have had it for a month now. Don't get me wrong..:-) I still have pain and I have Arthritis also. Wish I knew about this site before doing the SCS.....I will keep this information you gave me because I still have pain about 50% less with it. I was hoping to slow down on my pain pills, that have not changed yet. I was told to give it six months, so I'll see how it goes. You were a BIG HELP for me, I had never heard of anything that you mentioned, you give me hope. so thank you very much, and I am happy you are not in any pain, that's great! :-)
kris29211 foxy32222
Posted
I think my husband can have 4 programs at a time but his rep said they can add new ones and delete ones that don't work until they find ones that work! He can turn on all or shut off ones at anytime! If you are having a problem with one of the programs have your dr or rep tweak it! Turn the stimulator off if you are having problems with a task then turn it back on!
Cajunbella kris29211
Posted
I had a total disc replacement 12yrs ago w/bone graft and fusion at the L5-S1. That gave me tremendous relief for about seven yrs until I developed some arthritis in that area. Because of all the yrs prior and not doing anything about the nerve pain, I developed some serious nerve pain! Fast forward. After every attempt to ease the nerve pain, I was told my Neuro Pain docs that I was a candidate for a SCS. In 2015 I had it implanted. It felt like the answers to my prayers, and it was for about 7mos. Then, for the next 10mos I was in tremendous pain!!! The battery was pushing on the area of where I have new development of some Severe Arthritis in the Facet at the L3-L5, which is the nerve path of where the battery was located. They relocated, and still no luck. I could also NEVER get the SCS regulated in order for it to not over stimulate me in one area and not another. I met with the Medtronics Rep several to reprogram it and that never really worked. I wanted it out and so they did. Best thing ever!!!
I have several debilitating diagnosis that cause me a lot of pain.
The Nerve Blocks will help determine weither or not the pain doctor is hitting the right area. The relief may only last a day but if it gives you at least 80% relief during that time, then it was successful. This is an out patient procedure. Next, is the RFA. It's an out patient procedure as well. I would say that 98% of my nerve pain gone and it has help my Facet Arthritis Pain about 80%. I'll take those numbers any day of the week!!! Motto of this lessons...inquire about nerve blocks and RFA'S before putting a SCS in your body. Based on what I know now, I would NEVER AGREE to put one in or NEVER encourage one to have Implanted!!! My BIGGEST REGRET is that I wish I would have been given these options first before having the SCS...
foxy32222 kris29211
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Cajunbella foxy32222
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You are very welcome! My Pain Management doctor prescribed me with 800mg Motrin 2-3 times a day along with two Tylenol Arthritis. That works for me. The RFA can be repeated every 9mos. If I were you I would pull it up Nerve Blocks and RFA'S on the net.
Cajunbella foxy32222
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Now don't get me wrong. I still do get some nerve and back pain after I've over worked myself.
foxy32222 Cajunbella
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Oh I figured that you just sound like your pain was better. When I do an activity, I do have more pain, I just do my housework a little at a time until it's done :-) I will look up Nerve Blocks and RFA'S though. Take care :-)
NevroDisaster rachelle_09848
Posted
I've had quite a disaster with the Nevro and not to mention it was installed for foot pain which is not what the Nevro is meant for I have discovered. I am sickened from rural doctors! I had problems with temporary paralysis of both of my legs, two blood patches, and zero relief from the permanent SCS. Its been 3 months and am finally recovering but experiencing constant pain from the battery. A friend of mine also had an SCS placed over 5 years ago and constantly complains of the pain in the battery region. What ive learned is that bending can move the paddles just as easy as normal sleeping. It seems its a gamble. Anyways, im having this Nevro examined next week and likely removed as it doesnt help at all. I am having the DRG Axium installed soon thereafter since that is for foot pain specifically. UGH! And yes the Proclaim is new in the US but not in the UK.
Has the battery placement gotten better?
How is everything now?