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
candace55934 patricia65203
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Hi i was wondering if you were still around and if you had the spinal cord stimulator and how it was doing now I'm doing the trial right now and I'm trying to decide if I really want it or not and right now it feels weird like the leads moved or something
linda25733 candace55934
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foxy32222 candace55934
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Hi Candace55934, I saw your post. I just had the scs implant, and during the trial, I thought it was not helping, until they took the trial one out, after I was in so much pain. I had to deal with it a month before I got the permanent one in. Now, in the beginning, I was hoping after I got it, I would at least slow up on my pain meds, didn't happen. I still take 4 a day and sometimes 5. I went back to the Dr. office and met with the guy you have to go to, to get it programmed, I sat with him and we tried to tweak it. Here it is a little over a month, and I am wondering if I need it. My pain is still the same, sometimes I turn the scs on and it soothes my pain, I use a heating pad to help me also. Right now I don't know if it helped me or not. I think without it, my pain would be worse, but the bottom line is, I am still in pain. Now I went in knowing it would take away 50% of my pain, and I guess it does that, only because when I took the trial one out, my pain was unbelievable, so I got it. I just was hoping I could go back to work at least part-time, it's not happening yet. I was told to give it a year, then see how I feel, that I will do. I wish you good luck with yours. I guess take it one day at a time, everyone is different.
woodqueen40 linda25733
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ellen61306 linda25733
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Hi Linda, so I have a question. I haven't had one put in yet. I scared out of my wits. I'm small, 5'6, 105 lbs, they don't even know where they are going to put the battery. I'm afraid I'm going to feel everything, sounds to me like you are in the same boat. Please let me know how things are going for you. Ellen
foxy32222 ellen61306
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Hello ellen61306,
I just had my scs put in in February. You won't fell them put it in, as to they use a light sedative when doing so, as an outpatient same day procedure. You will be a little so from the incision, which doesn't last long maybe 1-2 weeks. You will have a visit later from the people that provide the scs, they will program it for you to use your remote control, and that can happen more than once if need be. So far I am doing fine. Sometimes I use it to help with the pain and sometimes I don't. It soothes my pain. But if you have issues with the remote they will tell you who to call, to program it to your needs. Anything else that bothers you, you can talk to your Dr. I was nervous at first too. Everyone has different issues. I wish you the best. One more thing I was hoping for, was to lower my pain meds, it did not change it, I still have to take them 4 times a day, sometime the Dr may reduce your meds, but it's up to you. Good Luck! and Relax :-)
candy_32315 ellen61306
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foxy32222 mitch2955
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I was told it will help about 50%. So far and I had my scs put in in this past February. I don't feel like it is really helping me. As of now I hardly us it. Sometimes I do with shorter time. Mine vibrate almost all over, including my left feet, which I wasn't having an issue there. I also have arthritis, so I am confused as to where my pain all over is coming from. I will see my Dr. next week and see what to do. The bottom line is this. When I had the temp scs put in, it helped some, and when they took that one out, my pain was worse, so I decided to get it. Now! I don't know what to do...
linda25733 patricia65203
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esp1000 patricia65203
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I'm having sever pain next to the site of my Medtronic scs. This one was to replace a much larger and oldr unit. I also have a 2nd scs on the other side of spine both just about hip height. The problem I'm having is severe pain if I lay at all really bad if ai lay on beck. Worst enough to make me cry. I'm 61 have CRPS in all 4 extremities all started from Motor Vehicle accident in 2010 . Long story. Anyway I've had pain tn this are since it was put in on Jan 29 th this year. Remember it was replacing a unit that was half the size of a big deck of cards . It had to go so when we put th new one in for legs wwe had doc do replacement on other. seen dr yesterday. today had CT scan and some pressure test with pressure cuffs on each extremity. I had to lay on back. I literally was screaming and crying it hurt so bad. it was worse than when my left arm had all flesh and muscle from above elbow to wrist peeled off. It hurt worse than when I ad appendicitis erupt in 2008. I was in excruciating pain for 3 days with that one. I died when in Er was gone for 3 minutes then again in surgery I Went again this time they got me back to after about 2 minutes. Anyway the pain I had then is nothing like this even the neuropathic pain is not this bad. And I;m a a bunch of drugs won't daay all but just enough to kill 2 grown men . I can't imagine an infection since there is no redness only pretty big lump in that area. The other scs is fine and actually the one next to this site seems fine although could it b ripping at other location Anyone any ideas pleas cause I'm afraid these people are going to come up empty. I haven't slept with wife of 18 yrs since Feb of this year I can't lay down..
allaroundanne esp1000
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So, if I am reading this correctly, this site didn't hurt with your old, larger Medtronic? You could lay on your back with that one? When exactly did you start having this excruciating pain, was it immediately after they turned this new SCS on, or did it take awhile after they implanted it? Is the pain confined just to the area around the device or does it radiate anywhere else? What does it feel like, stabbing? pins and needles? hot fire? Does anything make it feel better, like a heating pad or ice? Do you still feel the pain if you aren't laying on your back? I am a retired pain doc so maybe I can help figure this out for you.
Lynn
esp1000 patricia65203
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I have a Medtronics SCS actually 2 one for lower and 1 for upper. The unit for my arms was the first this has actually been changed twice and moved once . This last time the pain in area of the SCS was so bad had they not been putting one in for legs and going to replace this one with a newer much smaller battery , I was going to ask to have it removed. But because the new unit es half the size I decided regretfully to go for it. That was in Jan of this year. Since then I have not been able to lay in bed so sleep with my wife. I cannot stand for more then 5 minutes and the pain is so bad I'm in tears. I sleep curled up in recliner part way reclined. I have CRPS that started in left arm and now is in all limbs. My pain levels are very high and to top it off I developed ediema i n 2012 that has gotten so bad in lower legs and feet shores are almost impossible to wear. I live in Minnesota so winters are awfiul. The place where the scs where is swollen and hard the painis like a really bad tooth ache always there. I am on heavy opiotes plus several other meds. I do have a Kettamine compound that helps. My surgeon had test ran last week and a CAT scan Medtronics had told me the new unit would make MRI's possible this was a lie. I like the gal from there soi makes it hard. She's good helping with Stim . Funny thing is if I turn on the one for legs high enough to be effective I can't walk because it causes tremors . What has anyone found as the reason for the pain these things cause. My Surgeon said it may be a nerve being pinched from scare tissue I don't buy that but at least he's trying.
rachelle_09848 patricia65203
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So I’ve been stuck out of my phone and passwords for a month or so.. I can’t find my original post on here. But wanted to update you guys..
I had the trial SCS Dec 2017- all was well. Worked great. Had the permanent implant 2/28/2018- was in a lot of pain, burning over the battery, just not feeling right. Just the whole hardware was hurting so bad... I started to get sick end of March beguine if April. Had blood cultures and blood work done... then boom.... I was rushed into emergency surgery... They had to take it out. I got pseudomonas infection.. it’s hospital acquired... I had drains and wound packing... ugh..... I get wound care packing every other day or so... most of the inscisions have healed by now, I still have one the battery site that’s getting packed. I had to return to work 4/30/18 or I would loose my insurance.. so that’s when they removed the drain. It’s rediculous . I’m not on light duty cuz it’s not allowed. They are planning on replacing the scs in sept after I heal... They say they don’t know what happened. It really sucks. People you guys need to trust your gut!! I knew something was wrong, nobody listened! The infection was traveling to my brain so fast!!!
Pamma rachelle_09848
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Such a frightening experience!! I'm so sorry. Glad you're on the mend. You'll do better next time around. If you don't mind me asking - which scs brand did you have?
albert08798 Pamma
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foxy32222 rachelle_09848
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albert08798 foxy32222
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foxy32222 albert08798
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I asked because my daughter told me that I am having memory problems and need to see my Dr. I notice I am having an issue, but been putting it off as old age, I am 60 but I don't feel sixty if that does happen. Just trying to figure it out. I didn't recall the surgery either, but I thought that is suppose to happen, because I never remember anything after a surgery. They accidentally punched your Spinal Sack? WTH?!!! What is the Dr. saying about that?! I'm so sorry to hear that. How is your pain?
SleepyOne Pamma
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It's REALLY helpful when people give the brand name of the stim they have.
Regarding the stomach cramps, if you pull up a Nerve Root Innervation Chart on Google images, you can see which nerves correspond to body parts.
Hi all. Very helpful to hear your stories in terms of asking doctors and reps important question before moving forward. My own saga continues. I'm 74 and on Medicare with a BCBS supplement but still work full time. I experience hip and lower back pain as well as shoulder, shoulder blade pain.
My pain is pretty well controlled by the meds I'm on...butrans patch, lidoderm patch & Tylenol #4. However, two pain specialists (both anesthesiologists) have told me I no longer meet the government's requirements for opiods. A third said no stim would work on me since I didn't have nerve pain. No physician will allow me to remain on my current opiods. Apparently I'm on too much even though I've not increased my dose in six years. They say it's a stim or nothing. Here's the kicker. One of them sent a Medicare request in so my lidoderm patches would be covered by insurance. We got a letter back from Medicare saying they wouldn't cover my particular pain meds until I had not yet tried 1) morphine or 2) fentanyl, both of which are much stronger than what I'm on now. Unbelieveable, right?
Pain doc #1 wants me to have the St Jude Stim even though it would rule out MRIs in the future. Doc #2 says he only works with Boston Scientific. I researched stims and spoke with the reps from Medtronic in 2018 because that company had just rolled out what looked like a superior product.
I really don't want this thing but am being blackmailed into it. I welcome and appreciate your comments and ideas.