SPINAL CORD STIMULATOR SIDE EFFECTS

Ady,

I feel the same way, I hurt even more than ever, my legs and back I feel like I'm taking more meds than usual.

I hope you the best in your journey.

Best wishes

Cindy

I feel your pain 2 weeks in with permanent Boston scientific implant. Still pain on standing or sitting. Pain in upper back left shoulder, in ribs on left side down to low back. Spasms occurring stomach, legs and other places while sitting or laying down. No infection that I know of but going to surgeon today. My family members even think it's all in my head. Sick of being in pain and not being understood. Did you ever get relief?

Beth

I have had my Boston Scientific scs for a while now and get major relief from leg pain when using the high intensity modes. The lower intensity modes are much like a tens unit. Mine is programmed with several of each, but I find the higher one the better. The technician said the lower intensity programs modulate at 40 impulses a second much like a tens machine and the higher intensity modulates at about 800 impulses a second. I didn't have any infection and this scs was put in a little over 2 years from my last back surgery. Please make sure you have high intensity programs and if you do not ask a technician to install some. You really don't feel the higher intensity pulses in your body like you do the lower ones....it's almost like the machine isn't running but it is.

Going to surgeon to be released to Pain Managment doctor. I hAve gone to pain mgmt. They have said need to adjust settings with representative. I advised how much pain I'm having and they said that is why the implant was implanted. So I will get adjusted third time. I just want to be pain free or as close to it as I can you know the medication takes the edge off and I'm still in pain but now they won't even give you medication because you got the implant which isn't working. I wish I would not have gotten the surgery if I would have known that this was going to happen. I was hopeful that the surgery would work now if I turn it up as high as I can stand it with the vibration going my legs don't want to work correctly. The high intensity frequency worked a little as it feels like nothing is going on. I still have the pain when walking or standing for any amount of time doing regular housework I can't even get done what I need to do.

So I sit here and pain and now have to wonder how and when do they actually take it out is it a certain. Of time you have to wait. My boyfriend said that maybe it is your body rejecting the implant arm causing you other symptoms like constant pain painting other parts of your body. I'm really frustrated I see where other p.m. docs let people take their medication and have stimulator maybe that's

how they have better results. I wasn't sent to p.m. because I felt good.

Had third adjustment have high frequency and pulse tweaked a week ago. Still having pain called pain Mgmt as surgeon released me to them. Told them pain at battery site and still having pain. They pretty said well ask the Boston scientific rep. So basically they have washed Sheri hands of me and I'm stick with this implant? Told me to go back to surgeon. Wth I'm at a loss how do you get someone to listen to you and help with back pain.

Sorry for misspelling talk texting

What state do you live in Beth? Maybe I can find out a contact for you. I am at a level 2 with pain after the surgery but I am on 4 pain pills a day with that. Before the surgery my level stayed at 7 before the surgery.

I am at 7 rarely do I get s 6. I'm in VA

We should surgeon released me to pain mgmt but they just push me onto stimulator rep.

I would probably do better if they allowed medications. They only push me off onto stimulator rep. This is frustrating as I have reprogrammed 3-4 times in four months.. pain at battery site where wound reopened and had infection also pain where wires run up to lead that was implanted. But stimulator rep supposed to fix. Tried frequency where you don't feel tingling per rep had same pain as before surgery along with the above mentioned pain.

I range between 6-7 on pain so I went from 8 not much relief or as much as I thought or was hoping for or what was said per rep and pain mgmt doc.

Were you on pain medications prior to the SCS, Beth?  Did they just abruptly stop them when you got the SCS?  Is your pain management doc an anesthesiologist?  I am a retired pain management/anesthesiologist and I also am a chronic pain patient with a St. Jude burst SCS that was just put in Feb 2017.  The point of the SCS is not to completely get you off pain meds it is to improve your pain.  If you can totally come off, that's great, but a lot of patients end up still on some meds. I am having a complication with the generator so I am still on the same level of pain meds, but my pain doc was responsive to me.  You really sound abandoned.  Surgeons really don't follow chronic pain patients, they just do the surgery-- ie they put in the SCS and then they consider themselves done.  At that point they should send you back to the pain management doc who was seeing you who decided you needed the SCS.  The SCS rep is only responsible for tweaking the programming to help with your pain.  Complications from the unit itself need to be seen by one of the MDs-- tossing you back and forth isn't right.  Taking you off all your pain meds wasn't right either.  I have a feeling that being in VA you are a little too close to DC and the war on drugs mentality so that docs are anxious to not be writing for pain meds lest they lose their license because the feds are breathing down their necks.  Pain at the site where the anchors for the leads is common, I know I am having that.  Pain at the battery is too, especially if you had an infection and your wound opened.  You certainly had reason to have pain meds and your SCS won't help these pains. If I were you, I'd try one more appointment with your pain management doc but before you go take a look at the website of your SCS.  I am sure that it will state that it "helps" patients lower their pain medications, ie it doesn't say that all patients can stop all medications.  Remind him/her of your numerous complications and the pain you have gone through with those that the SCS could never help with, you haven't been given appropriate pain mangement or post operative follow-up.  Finally, you are tired of your doctors playing "keep away" with you referring you to the rep when you were having medical complications, that is not allowed medicolegally and is considered a form of patient abandonment. State it just that way and he will hopefully perk up. Then you can explain you are only down to a 6 from an 8 with the SCS and need some of your meds back.  I hope this helps.

Thanks for your advice I will try. Last night I fell from last step toward ground. My back is killing me. Hard to bend at waist which wasn't that easy before and pain in upper back not sure who to call. Pain Mgmt may refer to surgeon I'm back to an 8 8.5 on pain scale. Even pain in arms now I guess I shook up other parts of back.

Your pain is in the area where your leads or paddle are so I would let both docs know.  You could have dislodged them and be getting wrong signals now.  I would also say a call to your rep would be a good idea too.

I had X-ray nothing broken in back not sure if any new disc damage. Finally got appt with pain mgmt I guess only reason was due to X-ray otherwise they would have just tried to pass off to someone else. When I go will voice my concerns and hope to get some answers as to care etc.

I have been told I blame everything on this divice !!

Ashlee what brand of scs do you have and where do you live?

Is it maybe scare tissue crom trial implant I have been dealing with si ce june 2016. Pain and pinching where it came out at shoulder level. Never lect.Have had spasms whole cack about 10 days following with bowell changes, leg weakness and breathing problem like pulled rib muscles. MRI showed paracentral protrution at C3-4..They ha e had me go to everyother doctor to get this checked out, but this only started same time implant was done..3 therapist have said I have dislocared ribs?? Any imput at all in what is going on here? Pain mngmt is very defensive and won't belp me! Said coincidence that happened same time! I know I didnt have Any of these problems becore...I nust want answers, not cause any problems! Appreciate your imput. Personal Email welcomed too.

No you are not sick in the head the pains are real specially the side rib pain , that indicates that the leads are in the wrong place so they hurt when the machine is on , it happen to me on the installation and still today 9 years later can't use the machine for my upper extremities , sit with the programmer and have him shut off the zone that hits your side rib cage , they have the ability to do that , bit it get better after time but if you do not s**t the area off it will alwsy hurt , hopefully that gave you a better understanding 

Trust me I understand how NO ONE understands. We "look" normal so people tend not to believe me. Sometimes I'm able to do a few things but then they all look at me like sure your in pain

I know right. I have days I'm down can't do much then when I can move I usually try to do more than I should and end up back at square 1. Had appointment last week (which got cancelled enroute) now rescheduled for 2 weeks or so down road to discuss removal of SCS. The falling, chest pains and irregular heart rhythm, pain when deep breathing where lead wires run down back, pain in battery area charging or not, others, etc. I'm just wondering how many others have considered or talked with docs about removal? With the most recent falls a couple weeks ago I have new damage new section of back. I'm hoping they will look at it more seriously physical therapy feels and sees my pain.

I'm gonna be as honest as can be ,therapist doctors programmers just read things out the manual and what they been trained to do ,We the patients and everyone on this portal that has a nueoro stim are the ones that can relate to all these symptoms . Those rib pains , that's the leads in the wrong place and are hitting your chest cavity and it feels like broken ribs but it's not, have the Programer s**t off that zone and you will see your stim will work better , and as far as removal of anyone has complication now upon installation I recommend you have it removed asap, don't wait untill years latter like me when the leads have been there for years and muscle and scar tishue is solid and to have to pull that out after so many years , it will cause you some harm , and remember this is installed in your spinal canal any wrong move and you can stay paralyzed or permantly damanged , these are the things doctors don't tell us in the beginning , it's a nice check for them for the installation. And then they just kick you to the Programer afterwards . Programer? He just went to classes to read how the unit works and how to program is but unless you have it installed line us there is nothing you can do to tell me otherwise. These u its have so many other precautions we need to look out for that can seriously harm us , not trying to scare anyone but let's be realistic , no shut off button , if you loose your remote it's over for you and if the batter ever has a malfunction and heats up inside of you what can you do? Ask the Programer and doctor these questions I bet you they give you a 1-800 number, going on 9 years and one more year i need to replace battery , we are stuck with this device for life , if you play with it and try to change it take out it will cost more harm , it's a chance you take!

Boy are you living a nightmare.  I have a St. Jude's stim. Put in in March of this year.  The NEVRO trial did not work.  The trial was with the leads.  It started to work after one week when my female rep came to my home on a Sunday and totally undid what the head rep, for my area did.  Within 24 hours I had significant reduction in pain.

Then surgery and paddle installed.  Today, Aug. 27 and have had not one day of no pain.  After 2 months, the rep, tells me, "there is no more I can do for you.".  I pitched a fit.  Called the tech dept. and complained and asked for another rep.  Called the surgeon and told them to find me another rep.  Complained to the techs supervisor.  Was told he has over 10 years experience.  "So what I say, he can't find a way to program this stim."  We that went no where fast.  Fine me a new tech.  They did.  Two sessions, and was asked to text him in 5 days with the results of the new setting.  I did on 7/11,  "that the new setting did not work at all.  Today 8/27 he never replied.  I since told the surgeon, "Unless we find a super tech to fix this piece of crap, then I want it OUT, and I will find a way to help myself.

I have called twice, the Corporate Office at Abbott,  and talked to them after going through over seven different extensions,  I told them that I am not happy or pleased with their product.  First it doesn't work, tech help few and far between, tech always in hurry, no reasonable follow through since surgery.  Also told them that I could have 50 people call them with similar problems within an hour.  Told them, "Your patient relations leaves something to be desired.  

Had meeting with surgeon's PA. and reduced to tears as I am in pain 24/7 with no relief ever.  Told them I want it out of my body and I am not paying.  My surgeon then decided to take a CT of my spine to see if something else is affecting the efficiency of the stim.  Found that L4/L5 is weak from prior surgeries.  Tomorrow meeting a new neurosurgeon for my spine,

Have no idea what to expect.  So for me this experience with St. Jude's has not been a very pleasant one to say the least.  The fact that no one up or down the food chain gives a tinkers damn about those of us who have the stim in and they do not work,

I hope my update will give you all some pause that we are all in this together no matter what city, state or country we are in, the lack of care and concern is not there,

Good luck

Dee

 

Hi Beth

I just got my scs from Boston too. I'm about 2 weeks in and am in more pain than ever. Does it get better? I see your post was from 8 months ago. Please let me know how you are doing

Thank you for your time

Kandi

Sorry and I feel your pain! Yes take it out now while the wound is still fresh , and to them we only profit that they probly already spent between the doc Programer anestisiologist and the fluoroscopic X-ray , now they gonna try ever excuse possible to tell you it will work better later ! No such thing of it don’t work well no it ain’t gonna get any better ! They will sell you the world untill they get you to agree to do the implant , at the end of the the day no one , no one but is the patient is the one that has to deal with what these machines do ! Like they say unless you walk a mile in my shoes they wouldn’t know ! 

Best of luck !

Amen in waiting room now.

Hi Kandi, I am in Australia & I had my Medtronic Stim put in 7 months ago.. I thought I was going crazy with the extra pain I had & I amost asked for it to be taken out. I am happy to say that only now do I feel better, leg pain coverage is very good & the T8-9 pain I felt constantly before now only occurs if I do too much with my arms. I can't really lift anything but at least I am back to work and feeling semi normal.. here to tak if u need.. Kayleen xo

Hi

How long did it take for you to go back to work after the implant?? What kind of work do you do??  I’m only 4 weeks post op and they wanted me to go to work after 2 weeks. I’ve fought to stay off but have to return Tuesday... I’m hsving some issues at the battery site. But what is your experience with going back to work.. 

Thanks 

Rachelle from California 

These stimulators are causing more problems and more side effects after they are implanted. I should know my husband has all of them after 2 failures and removals and we are fighting Boston Scientific about it. Metallic taste in his mouth like eating nickels, pain where the battery was, burning in the spine, nerve damage in his legs, constant infections, and pain in the pockets where the batteries were. Increased pain beyond belief

hi

i had the scs, and my first permanent implant went bad! i got an infection and it went through my spine ans was going up to my brain they said! i got really sick sick then had emergency surgery about 4-5 weeks out. then healed with drains and bull**** tmghen had it re inplanted in sept 2019. since then , it doesnt really help! it hurts in the battery spot. i think its too high up.. so my left side battery hurts a s my initial pain is my right hip. cold weather is horrible. my meds have stayed the same and now thy want to wean me off with no other option . its all bull**** ! its no bog help! big bummer of a decision to get it! i thought it would help! goodluck

Moderator comment: I have edited this post due to the swearing. These are open forums so as per the T&Cs please do not use offensive language in posts otherwise they may be deleted.

I JUST READ YOUR MESSAGE. I HAVE THE SCS FOR A LITTLE OVER A YEAR. I WAS A LITTLE UPSET TO HEAR YOUR DR. WON'T GIVE YOU ANY PAIN MEDS AFTER GETTING YOUR SCS. MY FIRST THOUGHT WAS FOR YOU TO GET ANOTHER P.M. DR. I STILL HAVE TO TAKE MY OXYCODONE, A MUST. AFTER TAKING MY MEDS AND TURNING ON MY STIMULATOR, I GET RELIEF FROM PAIN. YES, IT TOOK ME A WHILE TO GET BETTER AFTER ADJUSTMENTS. I WAS HOPING TO SLOW DOWN ON MY MEDS BUT I STILL TAKE THEM. MY ISSUE IS I TAKE THEM EVERY 4-5 HOURS. WHAT THROUGH ME OFF WITH YOU IS THAT YOU SAID YOU FELT GOOD.... ARE YOU SAYING AFTER THE SCS WITHOUT MEDS, YOU FEEL GOOD? OR WAS IT AT THAT MOMENT? BECAUSE IF YOU DON'T NEED MEDS GREAT! BUT I HAVE TO TAKE BOTH. ONE OTHER ISSUE I HAVE IS I CAN'T STAND LONG AT ALL, OR WALK, NOR SITTING. I MOSTLY USE THE SCOOTER WHILE GROCERY SHOPPING. I HAVE FINALLY REALIZE THAT I WON'T BE ABLE TO WORK ANY MORE, WHICH IS DEPRESSING, BUT IT IS WHAT IT IS. BUT IF YOU NEED PAIN MEDS, YOU EITHER STRESS IT WITH YOUR DR. OR GET ANOTHER DR. GOOD LUCK!

I realize it as been some time since your post , but i am wondering how you are doing and what the end results was for your implant. I am having mine removed.

Hello Suzie,

Thank you for reaching out about the implant. i still have mine after 2 & a half years, and it has been on for around 30% of that time.

i actually have it off all the time now. It does help with pain, but it got to the stage where the pins & needles sensation was actually hurting more than the nerve pain was. My main problem was that by having it under Neuro control, I had to have a laminectomy at T8 to have the device implanted.

.The pain (new) from that surgery was so much more intense & continuous than I expected. The battery pack location in my top right bum is fine & pain free.

I have thought about having it taken out, but the damage has already been done. If the discs have been damaged from the surgery it will still be the same whether it is in or out.

In the meantime I am waiting on some amazing new 'thing' to come along and save the day.

Good luck with the operation, I am wishing for a pain free success story..!! Keep in touch, I am very interested in hearing if you have any pain after it is removed. li

Sorry I hit send by mistake..!!

I was going to say good luck with everything & best wishes for your surgery. Please stay in touch.

Kayleen