Spinal Cord Stimulator

Hi Tim,

I can certainly appreciate the pain you have. I am so happy with my SCS. I also was down to if this doesn’t work, you’ll suffer the rest of your life. My life has changed to the better drastically. I do things I would not have thought possible again. I didn’t have any of the issues that Sofballbob went thru. It was such an easy thing to do. This is what I recommend. Talk to your neurosurgeon, and then do a seven day trial. If it works, great and if not do not have the permanent implanted. I don’t know what Soballbob did, but during the trial, be careful how you move, bend, twist, lift, etc.  If you overdue it, the leads will move and the things Bob mentioned will happen. I had some adjustments during the trial which worked out well. So, I took the big step. I was careful during recovery and had little pain at all from surgery.  I had adjustments to different areas and strength, etc. and has been awesome since. I still have to take pain meds but not near as much  and I control the pain. I hope it works out for you. Remember, you can have more than two leads in your back which will offer even a greater range of coverage. I only have four programs but can get more if I want. I didn’t pay a penny for any as my insurance covered all. Good luck and keep me posted. 

I'm really happy for you El... maybe aracknoiditis is harder to treat. My symptoms of pain, tingling, burning, etc began in the bottom of my feet and had now moved about ankle high. Both feet equally. It feels like I'm standing on a hot concrete sidewalk on a hot summer day.... and can't get off! Tramadol takes the edge off. The SCS didn't get much below the knee???

Softballbob,

I'm in total agreement with you. My pain Mgnt Dr. said a trial stimulator is only allowed to be in for 3 days, I asked for just 2 more days with the trial, he said NO. Mine was in 3 months to long, I wanted it out after 3 weeks. My pain meds reduce my nerve damage from getting Guillian-Barre-Syndrome but not the pain from the Boston Scientific Stimulator, that never goes away. Can barely walk, never had problems with my spine now I can't stand or do any small chore without ending up on the floor curled up in a ball in excruciating pain. I was a Personal Trainer, now I feel like I'm an old old lady in excruciating pain.

Has anyone had Guillian-Barre-Syndrome and got a SCS and it helped your pain? Would love to know

Sorry it didn’t work for you. The greatest thing in the world to me and six friends that got one. I believe it must’ve been the surgeon. Fortunately, my pain doc was the surgeon as well. He is awesome. I had one adjustment after 2 weeks after surgery and actually getting better with time. 

I agree with you Pamela!! I only had the trial and had it only 3 days. That was 2016 and still have problems. Of course it was not related to SCS procedure....I am about broke going to doctors and still no answers. I had no back problems but now feels like all the large muscles in my right side are shortened and hip sits up higher. This also involves muscles going around in the chest and stomach. Chiro amd PT says I have dislocated ribs. I had terible muscle spasms after implant and have weakness in my legs to the point I cant walk. No doctor is going to get involved even if they do know what caused this. I would only consider this procedure if my life was so miserable I could not stand another day..because they, evidently , dont know what causes all these problems you hear about?? FDA should investigate these things a little better in my opinion.

That’s unfortunate. I don’t believe either one of your doctors followed Boston Science protocol. Which states that the trial must be 7 days minimum unless the patient requests removal earlier. The reason for 7 days is that it can take 3 days to overcome possible sourness from placement of leads and to give them a chance to ensure they are located properly. They may have moved during your trial and would not cover the correct areas. Mine was 7 days and didn’t make any movement that could’ve caused them to move. I didn’t want the trial to end because I noticed how bad my pain really was once the trial was over and they took it away. My doc did tell me I’d need the full 7 days of trial to determine it would be right for me. And it was. I can get my sciatic nerve pain down with a blast in one area. I have four settings which I can change as I see fit and have room for two more. They can add another one or two leads which would give me many more areas of coverage if I needed them. But, four works great for me. I also could’ve got the new one where you can get MRI’s if needed, but I have 8 rods in my back and can’t have an MRI anyways. They have came out recently with two even better models. Mine is so small. I can only tell where the battery is if I feel to touch it. Never feel anything except what I program in. I talked to many people through research across the country who had them before I decided to try it. I have discovered that not many positive results are posted in these forums. I believe the reason is that if it works great, those people don’t post about it. Most of the posts are from those who had issues with it. Which makes sense. I just wish that you all would’ve had the same results as I and others that I know personally. Because, like I said it has given me a quality of life that I never thought possible again. I can do so much I could do prior to the implant. Since I was supposed to have been paralyzed to where I am today amazes people who knew me before and have seen me since. Amazing is all I can say.  I do wish more successful stories would be posted as it give the impression there are more failures than great one which isn’t the case at all. My doc has a 90% success rate. It also helps that my Boston Science Rep is fantastic, on call for me 24/7. 

Elteec,,

I only had the trial in for 3 days & the right lead wasn't connected right. But some Drs don't admit they did wrong. I've been going to a pain mgnt Dr because my neurologist retired. I told them I got Guillian-Barre-Syndrome in 1/2010. When I saw the SCS approval letter it was for Lumbar pain. My entire body hur ts & is numb, my nerves are damaged. I was told after the fact anyone that got Guillian-Barre-Syndrome should never get an SCS. I need to find out. I contacted the GBS Foundation & they said absolutely NO to getting one. You're right it doesn't seem like I got the proper treatment by the proper Drs. They're actually pushing every patient to get one. My gf gets so upset when she goes, they push for her to get the SCS. I'm in worse shape now then before I got it. How was yours put in? My battery pack was laying on my bone, leads went up a 45° angle overlapping my thoracic spine to the metal plate where they did the lacamectomy. I go through the roof if anyone touches my back or where lacamectomy was. Think he cut to much off my spinal cord. I think I need an attorney.

Socksman, I contacted the FDA and gave them all of the information on the Boston Scientific Neuro Stimulator that was put in me. Sent me pages & pages of #'s????? Never found out if the stimulator used on me was defective. I was being electricuted and the pain never stopped. Out of the 3 months having it in me, I turned it on MAYBE 10x's. The bruises I get on my back besides looking very painful, are and you can see the outline where the SCS was put in me. I'm happy it's working for others & they must have had an amazing surgeon. I'm suffering from being pushed into getting it. Maybe some Drs get kick-backs.

I was never informed ny a doctor how or what was to be done. At the time

an appt. with his nurse was set up for me. But found out later it was medtro ic nurse. I asked what was worst could happen as I didn't know

anything other than it was minimally invasive surgery. She replied" It doesnt work." I said well ok then....said I could even go swimming afterwards...She spent all of 3 minutes including getting my signature saying it was explained. I kept waiting for dr. to talk to me but only after they started IV at procedure did He ask if I had questions????well..quess not. It was very painful, felt like he was going up through large muscles in my back.

Even shot more pain medication in but still painful..I should have just stopped it then and there. My 70 yr. old aunt had same problem at this place. She had no idea they were going to go up in her spine and on table she got upset and her BP shot way up. I asked her if they not exlpai ed procedure and she said no..I believe her but I am sure they covered their but by having her sign. Luckily they had to quit surgery on her.

I do remember I asked nurse(medtronic) what are some things that could happen and she said look up on site....I could not find anything prior, only that it should be considered before narcotics.

I wish you all the luck but honestly I don't think we will find a doctor to say our problems are from implant. I have been thru all the hoops last 18 months. Heart doctor, mri, nerve conduction, and even sent to gastro for stomach as I was having diareah and bloating, trouble breathing day imediatly after procedure. PM doctor never had anything in his report that I was nauseated, pinching pain in shoulder blade or red whelps from tape. Only said that problems was not caused by stimulator. Funny they said he was retiring after just started there 3 months prior. I don't think other doctors are gonna spend time in paperwork and phone calls for our plight and maybe they just stick together?? I would advise everyone that this IS NOT minimally i basi e surgery. I had it done to stop the narcotics, what a terrible mistake to believe the hype about these things. I also wrote FDA to investigate these things. I think problems are under reported because dr. reports from procedures present a 'no problems here procedures' when acually there were? Still have same feeli g in my shoulder blade like it is clamped and pinching nerve maki g it hard to breathe..but MRI shows nothing to answer questions?? Well quess I will stop now but could definitely say a lot more negative..just hope one day all of us affected negatively by this procedure will get some answers to what happened to us, really.

My new neurologist from Penn Univ ordered an MRI w/would contrast for thoracic & Lumbar spine. Almost 2 yrs after I got the SCS I have bruising & swelling at lacamectomy or my soft spot T4-T6, changes since post op, bruising & swelling where SCS leads, metal plate & battery pack we're placed & fluid at my T11-T12.

Who's at fault? Surgeon or Boston Scientific Neuro Stimulator?

May I ask your ages? I was 61 and wonder if the age and unknown arthritis could have been my problem. I never had back problems until stim trial

Hi socksmom... I am 76, played competitive softball till 2 years ago when I was diagnosed with spinal stenosis. After 8 operations I have a condition now called aracnoiditis. I got it from one of the contrast injections for a myleogram. I still have a disc-nerve problem but the aracnoiditis is untreatable.... Have to manage the paint. Tried the simulator, but did not help at all. My feet constantly feel like I'm standing on a hot summer sidewalk barefooted! Tramadol takes the edge off.

If you never had back problems, why did you do the stim trial??

I have terrible pain from hand injury. Developed RSD in that hand and arm. Had been on heavy narcotics for many years and this was suggested as alternative. Minimally invasive surgery was a lie...

Trial cut short because I had blisters and red whelps from tape and had pinching pain at where implant was anchored in. Pain relelief was heaven but had problems after and 2 years later still do. I had got sick immediately after procedure. I am glad for those who tolerate the procedure but would like to really know what happened to the rest of us...God Bless You and Be well..

Dont believe we are ever gonna find out why some of us have suffered from this implant and others nothing but good. Too much at risk for the higher powers for them to say...and they are the ones who are paying people who put it in. I wish FDA would get involved in this but looks like they are not interested. The makers of these things have a lot of money flowing from all their devices. A lot more money than all of us put together! Hope you find a way to reverse your damage.

Pamela,

So sorry you were put thru this. That should never happen to anyone. I have heard from others I’ve spoken with, that as soon as they got their first appointment with a pain doc he pushed the SCS. They obviously are getting kickbacks. My doc probably did as well, but fortunately it works for me. I still am required to take pain meds, but only half as much. That’s not all because of my back because “my body has beat beat up” according to my two docs. But, I chose my career path and pay for it. You know, I get angry when docs schedule an appointment with you, and when you finally talk to him he asks what brings you in today. Proof they didn’t even look at the charts they hold in their hands. I even read in their literature where you shouldn’t have even been considered for an SCS. You should take him to court for physical and mental damages. Again, I’m sorry for what happened to you. 

Forgot to answer your questions. Doc gave me a local where he made one small 3” incision in my middle back where the leads where fed down near the Spinal Cord in the correct position and where the device was put in and sewn up. The battery was implanted on my lower left back under fat where no bone is close to the surface. I’ve never had any pain associated with any of the devices or incisions. However, you can easily see where the battery is especially after losing a few pounds. Maybe if I bump against something solid I feel it but nothing too bad. I strap the charger on every 3-4 days to just keep it full for an hour or so. I love being able to do what I normally would do while charging. I’m just fortunate that the pain doc/surgeon consistently, along with my Boston Scientific rep followed up with me daily to make sure all was good. 

I’m 58 and talk to many patients in their 70’s who have it and love it. I have a ton of arthritis and nerve damage throughout my body. Considered I was suppose to have been paralyzed I’m doing good. No total pain relief but easier to control. I have arthritis, steonosis, spondylitis, and a lot of metal in my back. I really think it’s who the surgeon and pain doc is doing it. 

Elteec98,

I know it was. The surgeon put 4 in 4 different people with the same pain mgnt dr. When my pain mgnt dr saw my back after it was put in he was furious. There was an outline of all the parts he saw them & couldn't believe it. I asked him so who was the surgeons 1st guinea pig? He said you were. All 4 patients including me had compkaints. Needless to say he doesn't use his anymore . Not 1 dr will admit he screwed up, so I get to suffer for the rest of my life and he gets away Scott free. He was a very snoot nosed dr, acted better then everyone, didn't spend more then 5 minutes everytime I went to see him. Is there any way scar tissue be disolved or broken up? It's so painful. I can't deal with this anymore. I'm a strong person, have a very high tolerance for pain. But this, it feels like it's killing me from the inside out

What literature did you read that in? I would love to know. I'd LOVE to sink his big yacht

I just measured my incision, it's 2"'s & I wasnt awake, they knocked me out. The scar is deep, maybe because my back is swollen or he cut off to much of my vertebrae where the metal plate get screwed in. My battery was ON my bone, it even states on the MRI I got. Yours was put in correctly, mine was put in at a 45° angle from the plate to the battery. I know I'm repeating myself, Drs won't say when another Dr screwed up on an operation. I am mentally & physically ill because of this. I believe I have post traumatic distress. The psychiatrist fudged the questionnaire I filled out. I FAILED IT, it said I had major depression. But the letter he sent to my pain mgnt & GP Drs said I was mentally fine. I don't know why or how they get away with this.

I really wish I had the neurosurgeons that others had & are so happy & your pain is being controlled. If I could go back in time . ... Lol

Thank You. Youve got a beautiful heart!!!!

It sounds like you may be going to the same pain mgnt Dr and surgeon as me. Being pushed to get one, 3 day trial & problems on your right side from Boston Scientific Precision Spectra Stimulator (that's the 1 that was put in me). There were 4 other patients this surgeon hurt mentally, physically & socially. You said you had yours put in 2016? So did I, 3/2/2016. But yours wasn't put in at an angle was it? Mine looked like a snake, my neurologist took pictures in 5/2016. I filed with the FDA, they called me asking how much I would pay them to investigate my stimulattor. I thought they did that for free, it's their job to do so, isn't it?

Good Luck & God Bless EVERYONE that is truly being helped with the SCS in them.

What??? I thought FDA was here tp prptect us from unsafe or harmful food , drugs and devices included! I read that the problems are so underreported and not timely reported. Coverups...We cant do anything to the powers that be but we can tell others there are problems with this noninvasive procedure! Maybe if enough complain someone will investigate what is going on. Sounds like FDA is in profitable bussiness also. I sent my info to them too hoping they would monitor ? So sad I had this done. Cant hardly get through grocery store.

Oh. I had Medtronic may 2016. None of my complaints or symtoms was ever in doctors reports that went ahead of me to other doctors. Glad I took pictures or they would have thought I was lying. But docs will stick together mostly. Good luck.

I want to Thank y'all My Pain Dr has backed off pushing me to let him install this device in my back and my Cardiologist said no way also . I told my Pain Dr I was really scared to have any more Surgerys or any type implants and he acted like I was just wanting to stay on the medication .No I just dont want to live in chronic pain .With all the restrictions the DEA is putting on DR's now I'm afraid the Dr's are going to just throw us to the wolves.God Bless you all I pray for us all daily . 

 

And I'm praying also... And naming names!

I had the Boston trial and they really try to push it. After the initial 7 day trial and no relief, the rep added 3 more days after she had the pain doctor slide the sensors another inch or so lower. My problem is in my feet and she couldn't program anything below the knees..

Even tried to convince me that when it's permanent, it will be more stable and really work! Yeah, right!

Don't know about any of you, but I had a problem with interference from our house alarm system?!? If it was set and I was near a sensor it would send little waves of shock thru the legs to the back.

Also, when I would program it for sitting, and then stand up, it was like rubbing up against an electrical wire... Lightening bolt down my legs to my feet... Terrible!