I currently have the Boston scientific scs which in November replaced the original Medtronic scs. I'm in USA and the Dr. is out of Okemos, Michigan. Before I made the decision to get the implants I tried injections, nerve burning, physical therapy etc. I didn't sleep at night ever. Since the first implant the first 3 months was awesome. After that I had pain around the battery during and after chargingthe unit. The original implant was in May of2014. The battery itself shifted up to my waistband and became painful. I was spending more time with it off then on. Last November I had that unit replaced with the Boston Scientific scs. Right from the beginning things were a lot different. Partially due to the antibiotics they used fire the surgery and after. I assumed the bowel issues were all from the antibiotics. I'm now realizing that some may be from the unit. I'm noticing that my digestive system seems to be in limbo if I have the scs turned up enough to ease the pain. The things I liked about this unit was more control over the stimulation areas and that I could control the radius of the stimulation as well as the rate and amplitude. It seems though that when I am able to make my lower back and left leg less painful that I slow down my digestion. I have not been able to eliminate the pain killers because of course it doesn't help my neck. In all reality my neck has become much worse then it was in 2014. I no longer understand if this unit is actually helping me or harming me.
I have also been experiencing pain in my left hip along the side and front. Sometimes it's just a pinching feeling while other times it's a stabbing pain. I'm so tired of injections and procedures that all seem to be a very temporary thing. I'm at a loss and just plain tired
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.
Hi Patricia,
Are you still having the same problems?
I had my 2nd implant put in 3 weeks ago, and it is working great for my leg pain, but like you, I have limited energy to walk to sit up for any longer than half an hour and its already been 3 weeks. The worst part is the pain in my upper back to the right side of my wound. I can hardly put my arms in the air, but having a shower and washing my hair is just so painful and then the rest of the day I am really bad. I just don't know what to do and the docs and scs people are saying it will settle. I am just concerned that I have now got another pain issue that will impact my life as well. I have also had a few times when the scs turns itself off (apparently cannot happen - so it must be in my head).. the pain in my legs when it is off is so bad, it is like I forgot how much pain I was in, and the pain is unbelievable. I would be interested to see how you are doing.
Thanks so much.
Kayleen
Cynthia I too have a stim. Mine is St. Judes paddle put in on 3/2. As of today I have just as much pain as before the surgery. Before the implant, I had a lot of pain but could function, I.e. Shop, take my grandkids to Karate, play with my daughters day care toddlers, maintain my home. I am anal about it. Right now I can do nothing. It's painful just to walk. I see the rep on Monday for more reprogramming. I at my wits end. No one has any answers. While in the trial in 6 days, relief was there about 50%, I couldn't wait for the surgery.
Problem...trial used two leads, surgery a paddle. The parameters from the trial cannot be used in the paddle. So it is constant reprogramming with no end sight.
I wish you good luck and get better with more pain reduction. Keep us posted.
Dee
Hi Krissy, I am at the very beginning of getting the Nuervo Implant.. I don't know like you are very scared..
I have had 2 neck fusion surgeries about 15 years ago.. I don't know have plates and screws of Titanium from C4-6...
I was getting headaches, numbness and tingling in the my right forearm that was very painful at the time.. It was horrible..
Now I'm getting headaches again.. Much worse than I've ever been had in my life.. I take very heavy duty pain pills that don't work in fact they barely touch it.. The headaches go from the very top of the neck and will spread to my left temple to my left eye.. This has been going on for about 3 years and only getting worse.. I had been to an Orthopedic Dr after having an MRI, CT scan and x-rays.
After him reviewing the results I was told that I'm not a candidate for surgery. I have several herniated disks and something to do with the sacs between the disks..
At that time I was told about the Nuervo unit.. I can't find much on cervical spine only Lumbar..
I'm scared to have this done since it's new on the market here in the United States...
What was your procedure like?? Is it painful?? Do you think it was worth it??
Would you recommend it to anyone?? How are you recuperating??
Sorry for all the questions but just feel free to that it's my only hope of even having a somewhat normal life..
My quality of life right now is awful..
Thank you so much for your help..
I had stimulator done 12/30//17. I have pain at and below battery site. Pain in low back same as before implant. Battery constantly needs charged as I can only use high rate almost 100%. I fell which has caused more pain in low back as well as new pain upper and middle of back. Also having problems with arms and hands I may have damaged upper disk. I have had reprogrammed 5 times to no relief. Can't walk far or stand long or sit long periods. Hope you find answers. It took me falling and goi g to er for X-ray to get pain doc to see me otherwise they referred me to surgeon who referred me to pain doctor then they said call rep for adjustment. I think I should have waited or tried something else.
I had mine put in about 2 months ago. Helped the leg and lower back about 50/60%. Nothing for my neck or upper back or right arm. I promise my mind is being effectby this. No one believes me. I am sending text to wrong people, missing appointments and still need to take the stupid pain medication.
The trial went well. However now the doctor and ST. Jude's complete disagree about what number it should be set at. Had to text st. Jude's nurse the other day because my entire leg went numb after cleaning kitchen and doing laundry.
I was supposed too "get my life back" I seem to have more limitations now!
Can not get rid of the uti I got right after surgery. They are on round 3 of different antibiotics. Wonder if it has something to do with the placement of the actual device, right on top of my kidney?
I have been told I blame everything on this divice !!
yes i can relate i have a medronic stimulator implant for 9 years now. only people who have this device can relate ( no one else) not the doctor or the programers, remeber these people take a class to learn how to install and the propgramer programs, the dont live the daiy strugles that we go thru with this device. only we can relate to differnt symotoms we experience with this device.Dont mean to sound negative or scared people from this device but that is exactly what it is , doctor and programer dont have the answer for you because they dont know what it is to have one implanted in them let them walk a mile in our shoes then maybe they will understand all the differnt feeling you get with this device. as for your question im not an expert but i can only imagine it is coming from your device, remember you have leads going down your spine that shift on your everyday movements even when you sleep so maybe one of your leads are pressing up on that never that controls that part of your leg. Not something the docotor want to admit to or correct , my suggestion to you is try not to overework your self until at least 2 years , try to lie on the opposite side of the pain see how that works and if it does ,you know your leads are the problem, as far as wallking with the device on i dont even do it its very uncofortable and mind distracting. also be very careful on mri machine that are not compatable like mine , i have to get a new device upgrade but i refuse to go thru the surgery again , they ruptured my spinal sack upon instalation so nothing i would want to chance again, and for anyone with this device know that you will feel eletrical sensation and vibration with the unit off something else no one has answers too ..
hopefully that was helpful