SPINAL CORD STIMULATOR SIDE EFFECTS

Just found this forum and signed up because I'm looking for help. I just completed the trial SCS and was thinking of having it put in except a about a week after having the trial removed I started having cramps in weird places. I had an L5-S1 fusion and nerve pain down both legs but these cramps are all over. First night is was in the kidney area. All testing and imaging were normal. Next night was in the right side of neck and shoulder, followed by right flank and so on. It's been over 3 weeks now and they keep coming back. The pain from the cramps are the most painful thing I've felt since my surgery over 3 years ago. Nobody wants help me as far as doctors go. They just want to pass me off.

Has anyone ever had or found anyone else that has had an issue like this? My wife doesn't want to get it out in anymore.

I had the St Jude Stimulator Model 3788 implanted on the 29th of August, 2013. At first all was well, then I have had back pains that never stop.  I have weakness even more weakness with my legs, my knees hurt so bad.  I can't turn the unit on because I start getting Vertigo to the point I feel like fainting. My stomach vibrates so much with it on I get sick to my stomach.  I can't sleep because I have so much pain in my legs they twitch.

The whole time I thought is was just I was getting work with my back problems to learn St. Jude had to recall them and I was never told and the recall was before my surgery.

I think you are right because I have wanted to even commit suicide just so the pain would stop. I am suppose to go to a doctor to get this unit replaced Monday, I think I am going to ask them some hard questions because I have always been in pain but never 24/7. A pain level of 6 non-stop and with my legs now twitching in pain I can't sleep well and they have me on like 5 different Medication that includes those nasty pain meds.

I know you posted it 3 years ago but you just helped me because you have some of the same things I have been experiencing after 3 to 6 mounts of having in.  I now rarely use it because it only takes the bite out of the pain down my left leg but causes other stuffs when in use.  I though it was just because I worked 20 years doing 911 EMS work but I keep finding people like you saying some of the same things.

I had the trial scs done almost 2 months ago for a week. On the second day to the last it was the worst pain Ive ever felt. We moved from PA to VA recently and every Pain Care facility wanted to either do a spinal fusion or finally this SCS...I was very hopeful...but boy did that change. After it was removed I had 2 trips to the ER...one by ambulance.

In PA my PCP prescribed me pain medication that helped me perform household duties...over a 3 year period. I got here and completely cut off and now I cant do almost anything...and have 2 children under and our 3rd due any day. I'm petrified because how am I suppose to participate? I cant take care of myself properly or my children...now a baby. Unless I can numb this pain again...I am useless. The depression is almost too much and our yard is overgrown because I cant cut it.

i had.mine placed almost a month ago and my lower back pain is gone now my pain is above my left rib cage to my shoulder I don't know why anyone else have this problem.

I have had more than 25 surgeries. I had the single Medtronic ( battery/generator died after second year) - DUAL Medtronic ( battery/generator kept flipping then plug mal- functioned wires came out of plug and started shocking me ) then in 2014 Medtronic scs removed and BOSTON SCIENTIFIC DUAL SPINAL CORD STIMULATOR was implanted and my battery/ generator is now implanted above my right breast! I was injured at work in 1997 ended up with CRPS on right side of my body and it migrated to left side after several surgeries due to adjustment of leads and nerves have been cut and or severed. I too have major pain in both legs and feet and due to more nerves being cut and or severed after the 2015 surgery to rewire and move the battery/ generator to my chest my arms and hands are in pain as well. I use arm crutches to aid my walking. I also now have trouble rising from a sitting position and attempting to walk has become more difficult. The surgeons, hospitals and the two companies are very aware of all of this information. I am on more pain meds than I ever wanted to take! YES! cold weather

does cause more pain, but so do the surgeries! If I had a do over I would not go through this again! To all of you I wish you the best!

you are not alone patricia. i got hit by a car going 55mph with me at a standstill. crash test dummies get hit with 35mph impacts. i had my SCS implanted 2 months ago. long before i had the 2 operations, i told the doctor and the rep that i had no leg and butt pain, at all, not since having 2 redo back surgeries, fusing 19 levels altogether. i read where it would target, butt and leg pain, so i researched other options. i have severe vulvodynia , neurogenic bladder, interstial cystitis, and worse misery from a sacral nerve entrapment, so i requested an InterStim.i also have intense and constant itching there, for 8 years straight. i use lidocaine topically, and continuously sit on ice packs. i asked the doctor twice if i could get another option INSTEAD of the SCS.she replied that i should get the SCS first. for years i've had to use lidocaine ointment both topically and internally, and sit on ice packs continuously. neurological pain causes intense vaginal and genital burning. it is similar to pudendal nerve entrapment. 15 docs in a row didn't send me for a neurogram, not until i found it online and asked for it. all of them knew i was utterly desperate. i had one done at the UCSF hospital. they show all your nerves in the place you are scanned. if only i'd had one 20 years ago. i got injections in the obturator nerve, and the pudendal too, without effect. after getting the SCS , i told her it didn't work where i had pain, as predicted, that it was a mistake. i told her my pelvic pain had INCREASED, my middle back now hurts and is weakening of my entire spine. i have more trouble walking. told her i'd bargained with her for 2 other kinds of stimulators, the InterStim for IC and neurogenic bladder, and i asked her to instead try tibial stimulator, which hits the pelvic area. both times she said no, get the SCS FIRST, and both times, i questioned her decision. but what do i know from SCS's? nada. i deferred to the expert, whom i told i felt she hadn't listened to me. she was shocked.

Pat,

I, too, have a SCS as of three months ago and am experiencing excruciating, debilitating pain in my legs and arms, especially my hands. I m unable to walk, even n the apartment,

without a walker and have had numerous painful falls. i've also been extremely irritable,

which my dear caretaker is, understandably, getting very tired of dealing with.

I'm going to give it a few more time, but am considering having it removed.

Hope you're doing better.

Jean