Spinal Cord Stimulator

Hi MarkL & welcome to the forum. Sorry to read about all of the surgeries that you have had over the years. Sadly, that many surgeries made you predisposed to failed back syndrome. The mechanical issues can be fixed but sometimes the pain can get worse over time.

Yes, we have had members come through here that had the spinal stimulators put in with paddles. When they came out pain mgt drs were all for them so they could get their patients off of narcotics. Since the "opioid crisis" hit, the drs are really pushing them more to patients that require long term pain meds.

The vast majority of the prior members here were not a success story. They had problems, leads breaking, migrating, no pain relief to little relief after the implant, infections, battery getting too hot just to list some things that has happened to people. I urge you to do a google search for this investigation report that came out November 2018. Just google "Patients shocked, burned by devices touted to treat pain". It confirms the stories from past members here. It's a real eye opener. What is worse is the FDA is very lax on clinical studies when approving medical devices, this was admitted by the FDA.

Please understand, I am not trying to scare you. This a personal decision only you can make. However, as a patient we must do our own research & due diligence before committing to anything like this. We cannot rely on our drs to give us this type of information. A dr will not tell us about the failures, if asked it will be a watered down version.

A neurosurgeon that is very experienced with implants is the only dr you should allow to the procedure. You may have some potential complications because of all of the surgeries & you only want the best working on you. I think you were asking about the leads, scar tissue has to form on the leads to anchor them in place.

Another option I will put out here to you. Has your pain mgt dr ever mentioned having a pain pump implanted? If I were in your shoes, I would discuss this with my pain mgt dr of having a trial for implanted pain pump. During the trial if the pain is reduced by at least 50% it is considered a success. You would know if it would work. You have much better pain control & it is continuous, not like chasing the pain with oral meds. Yes, a person is still on a narcotic, but a very low dose, less than what you are taking in oral meds. I had one implanted in 05 & 2013. The goal is better pain control which gives us better quality of life. I am not trying to push a pain pump on you, but given your circumstances your dr should have talked to you about one. One of our mods here named WhiteBeard also had one implanted & he says he wish he had done it much sooner. He has had several surgeries too. Check out Medtronics.com & read about the pain pumps if you are interested. It is very informative & a user friendly site.

I don't know if your dr told you this or not, if you were to encounter a problem with the device he cannot help you. He is not trained to deal with them & you will be instructed to call your rep. A rep is assigned to contact if you have questions or problems. Usually the rep will meet you at the drs office. Another thing is discuss if the company will charge you for tuneups later on down the road. We've had members that needed theirs tweaked a year after the implant & ran into problems. The company charged for the tweaking & their insurance would not pay for it. That can get costly for a patient.

If you have any more questions feel free to ask. We will do our best to help in any way we can.

Mark:
I will second what Susie has cautioned.

Once a SCS is implanted it is very difficult to reverse course if there are subsequent problems.

A SCS is basically a TENS unit placed internally.

Latent problems can include excessive scar tissue that impedes the functioning of the leads or electrodes; shifting or migration in position of the electrodes; erosion of the covering of the leads; battery failure and/or premature running down of battery power; painful “zaps” and uneven current flow; and more. Identifying who is responsible with costs associated with upkeep of the unit and electrodes and leads after initial placement also needs to be well-understood and specifically outlined in a contractural writing. Some people have been surprised by being responsible for high costs of maintain a SCS in the months/years after placement.

I also agree with Susie to look into an implanted pain pump before you sign in they dotted line for a SCS. The clinical track record of the pain pump for delivery of medication is superior to the SCS.

Protracted, severe pain can make anyone desperate for relief. Pain can make a person vulnerable to blind acceptance when presented with a modality or treatment approach that offers hope.

Take your time with making a decision.
Karen

Good luck. It will take a while to get use to. Make sure you are getting a Mri safe device. I wouldn’t have any other. I have had several mri s since getting the implant.

Bigecase, yes it is MRI compatible. Thanks for your response and I hope all is well with you!
Karen.. thank you too! I like the positive karma in the wide universe, I am certain that will help! I hope you are doing well!

MarkL. so sorry to read your update. I hope the dr can figure out what is going on. It's tough trying things to help lessen our pain & improve our quality of life without decent results.

Keep us posted.

Thank you, I will talk to my doctor about a pain patch. I need to find something that will relieve at least some of the pain. The evenings are still the worst, sometimes unbearable. Again, thanks for the suggestion, I will be seeing my doctor soon. I hope you are still getting your pain under control as much as possible.

misstrish-
I’m in your same position. I have an appointment for scs permanent placement 8/16/19.
My trial took all the pain away. In the mean time, I suffer.

I hope you find relief.

I am wanting to ask beachbumgirl if she had the neuro stimulator implanted the other day. 8/16/19... How are you doing my friend? has it helped? how much? Sorry for all the questions.... really I am.... I am still waiting and fighting with ins. yet.. we already appealed it once... now we have to appeal again.??? This is nuts... I am going back to my dr this week, and think I just might try the pain pump instead.... All these meds are making me nuts.. Our Insurance just doesn't feel this will be the option for me..... Like they know>? God Bless you beachbum girl... let me know, how you are honey.. please...Trish

Hello Mark. Your post sounds just like my condition. I’m in pain everyday all day in the past 10 years. It’s been getting worse this past year. I had the SCS for 7 years. It only helps very little. I’m glad that you can still work, I only wish that my body could allow me to work. I too get around 4-5 hours of sleep a night. It is so depressing. I’m also on the same meds. Good luck with your new system.

I’m sorry to hear this, it sounds like we both know how horrible the pain can be. I am fortunate enough to be the GM of a company that my duties allow me to work. The pain at night, and then being so exhausted the next day, makes it still a challenge but I realize some are not as fortunate. I still use my SCS but it helps very little. And I agree, it frustrating on how often you have to charge it. Hang in there and I hope your docs can somehow figure out how to help you with your pain. My next appointment with my pain doc I plan on discussing a pain pump. Good luck and keep us updated on how you are doing.

I'm on my 5th and final day of the SCS Medtronic trial - I am having it removed a day or two early as I have had only mild relief, I would say overall about 25ish%. Basically all it as done is to take the edge off, about like taking some Gabapentin. I can walk barefoot and sit a little longer than I could without it but the burning pain hasn't let up nearly enough to warrant considering this option.

Since 2006, I have had 3 back surgeries, the last being a fusion at L4/L5 in January of 2017. My pain has been almost 100% nerve pain radiating from my lower back and piriformis area through my pudendal nerve and to my right foot and big toe. I also have neuropathy in that foot due to chronic Lyme which I've had since 2013. I had both knees replaced in 2015 and I'm sure that had something to do with my back appearing unstable. At the time of the fusion, my right toe and foot were going numb and they discovered that I had a decent step off at L4/L5 but I had no back pain - only numbness and nerve pain. I had a laminectomy in 2016 that didn't help and a 2nd surgical opinion wanted to correct the step off and said it would free up the nerves (that were only mildly showing impingement). I so regret having that surgery! I guess the moral of this the story is listen to your gut, at some level I knew that wasn't the issue but I was so afraid of permanent nerve damage I proceeded anyway. Even now, my myelogram and x-rays don't show enough impingement to warrant trying to correct it so it but yet I am in constant and sometimes unbearable pain. Does anyone know of a way to find the location of scar tissue? I know that ozone can help break it down if you can find it's origin.

Interestingly enough, since I have had the leads in this week - my BACK has begun really aching. At least that is what if feels like, it could be muscular it's hard to tell with all the leads and device still taped to me. It hurts enough to terminate the trial early. Sorry for going on ... I didn't mean to but I guess it felt good to share with someone new, my poor family is so worried about me I try not to talk about it to much but they can see the level of pain I am in. Mostly I just wanted to say thank you to everyone who posted in this thread and all of the valuable information - it has helped a lot.

Teri

It’s been a few months since I posted but basically i’m not any better, in fact my condition has worsened. After 2 lumbar fusions (late 2016 and 2017) I was diagnosed with Failed Back Syndrome. I have been seeing a pain doctor who has tried just about everything including implanting a Spinal Cord Stimulator in April of this year. It has not helped at all. I am 60 years old and still working in management. I take 5/325 Oxycodone whenever I’m not working in the daytime, and take one Oxcotin 20mg at bedtime. The pain in my lower back is horrible and becoming more frequent. When I ask about maybe having an issue with the screws or plates in my back, the doctors say they see nothing like that on the MRI or Xrays. I’m not sure where to go from here other than to continue to research this on my own. I am considering asking my pain doctor about the possibility of a pain pump. Other than deciding to retire within the next 6 months, I don’t see much relief coming in the future. Any opinions on a pain pump for chronic low back pain? Thanks