8 mos past SCS paddle implantation

I went back to when you first posted here about getting the SCS unit. I am sorry to read that the unit is not helping. It sounds like you have had your limit, I understand. I suggest since you are not getting the relief you had hoped for, I would make an appt with the PM dr & tell him you want it taken out. Be honest with him, make a list of everything that is going on. You had a bad time starting when it was first put in. I know you took a chance & hoped it would help. The only other option I can see is talk to the dr about an implanted pain pump & get his thoughts. Are you still against having back surgery, you had touched on that subject before.

Take care.

about the muscle relaxer, have you ever tried Baclofen? I urge you to go the Drugs.com & look it up. It has a completely different makeup like the typical ones. It works on the central nervous system where the others do not. It should be taken every day at the same time to keep the serum levels at their full potential. It can have side effects like anything we take, but in a week or so they should dissipate. I have been on muscle relaxers for years & probably been on nearly every one of them. I was put on Baclofen several years ago & what a difference. You may not have any luck getting a benzo, there has been a huge crack down on the drs rxing them. I suggest trying the Baclofen. I was fortunate to have zero side effects. I have issues with a lot of medications causing the reverse of what it should do, this includes OTC stuff. My drs shake their heads because it is such a challenge for them.

Only you can make the decision about the SCS unit being removed or how much relief you are getting. You have had the unit for 8 months now, looking back over the past 8 months should give you an idea of whether it is helping you or not. I have seen more failures here at HW than success stories. I try to remain neutral when someone new comes along saying their dr has recommended the unit. Myself, I would never consider one, too many issues with them & that ultimate wonderful relief drs talk about, I don't buy. Their goal is to get their patient off of narcotics. Even more so now with the environment of pain medications. When I went down the pain pump journey, by that time I was looking at my quality of life at that point. I initially rejected the pump idea, I looked at my dr & said I am too young for that. He said that is fine, it is an option & I am betting in 3 months we will be discussing it again. He was right 3 months later I said I want to do a trial.

Surgery can come with its own set of potential risks. Any surgery involving the spine is not fun, but again it is what the person expects in the long run. Can you live with some possible restrictions, are you willing to follow the drs post op directions to the letter. How a person feels mentally about surgery has its own component. I have seen people say oh I am having surgery & I will never be the same again or I am not going to be able to do anything. Guess what, that mind set has a huge impact on how well they do. At the same time you cannot have the ones that do not listen to their dr & they are going to do things their way, that is disastrous on every level.

Again, it is all about your quality of life now & in the future. Not every surgery is a failure. If you mention surgery to people you will hear every horror story imaginable. All that does is terrify the person. If they were all failures drs would not be allowed to do them & insurance would not pay for them to be done. I suggest any conversation of surgery be kept between yourself & spouse, unless you are in to being terrfied.

You will find that most of here prefer a neurosurgeon for any spine surgery. Preferably a board certified neurosurgeon too. I am quite sure your insurance has them on the plan. They stay up on their education in order to stay board certified & there is a difference. You don't visit just one, you see get 2nd & 3 rd opinions. Do not see a couple in the same group either. A good surgeon will never insist a patient have surgery unless it is an emergency. Instead the dr will say here are your options. If you are not given options, you chalk that dr off.

Again, it is all about quality of life!!

I know the feeling except for me it was the tennis ball feeling under my shoulder blades that knocked me for a loop. The lower back pain was the worst of the two. I am not sure what mg of Baclofen you were taking either. Leads can also migrate I am sure you know this.

Have you sat down & had a real conversation with your dr on how all of this is having an effect on your life?

I suggest that you copy what you posted here & discuss it ALL with the dr. Eight months out you should be feeling better & this is not what I am hearing out of you. You have a very expensive tool implanted that is not doing the job for you. This give it another month would have ran its course with me. Are you on any type of pain medication? I am sorry to read another person not having satisfactory results with their SCS. I have two friends that went this route & regretted it.

Wow, I am shocked that you are on Methadone. The CDC has pushed drs to take patients off of it. It's a cheap drug & can help with pain, but has some bad side effects. At 50mg if it comes down to you being taken off of it, it will be a long taper. I don't know how long you have been on it, but I sure hope you are seen by a cardiologist to have your heart checked out periodically. There are other pain meds out there that your PM dr can try you on.

Take care.

First off, let me make it very clear, no one in this forum will ever judge you or anyone else about their pain medications. My initial comment about being on Methadone is because of the CDC & NIH targeted Methadone being rx'd for pain & they want drs to stop rxing it. Chronic pain patients have that certain stigma attached to them because we do require medication to function. One of the biggest problems with Methadone is this, drs were prescribing a drug for pain that they knew nothing about!! Many PM drs were putting patients on it because they were abusing their medications, they felt Methadone would be a great deterrent for those patients. I am not pointing a finger at you & saying this was your situation. You had a PM dr that was just what you said, not a good dr. The next angle is its cheap & works on pain.

Our regular drs such as surgeons, PCP's & PM drs know nothing about Methadone, I mean nothing. I know of situations where surgeons have refused to do surgery on patients as long as they are on Methadone. Why, because they do not know how to manage the post op pain & anesthesiologists do not know a thing about it either. For them the risks are too great. Methadone has a completely different way of working than a regular opioid for pain & these drs are clueless about this. This is why so many patients end up having tremendous issues trying to get off of it. The issue with it affecting the heart is a very real, hearing loss issues, destroying teeth & many other things. I do urge you to have your heart checked out by a cardiologist. In the archives here at HW there are lots of posts about what happened to members that were on Methadone for pain.

You have a lot going on & I do hope that your drs can come up with a plan to help you. Your quality of life is not good & you are are too young to have to stay on this path.

Keep us posted on how you are doing. By the way since you posted this week we have members named Navy & Bott that are new to HW. Both have SCS units and are getting theirs removed.

The reason these drs push the units is the lack of knowledge. That scares the living hell out of me. If they really knew about them they would not be so quick to think this is an answer to their prayers in getting patients off of narcotics. Get that monkey off of his back. Think about it, if anything goes wrong with one the dr cannot do a flipping thing, the rep has to be brought in. The rep goes through his little list of things to check. When something different shows up on his check list, he doesn't know what the hell to do either. That is not fair to the patients because people are having real problems with these units & no one knows what the hell to do or why it is happening. This has been going on from day one with them. I have heard many people say they are no different than a tens unit except implanted. I am extremely sorry that you have become another statistic with one.

The rep shows up at the drs office gives a 20 minute speech on how great these units are for controlling pain & how the patient will no longer need pain medication, NONE!! Believe me, most patients find their selves without any pain medication once it is implanted. If a problem arises I want a dr on hand that knows what the issue is & know how to correct it.

Is your unit compatible to have an MRI? I am asking because if so, if its been awhile since you had an MRI maybe this is something to think about. I have a pain pump implanted & some other metal stuff that is not MRI compatible unfortunately. If you ever entertain the thought of a pain pump, ask anything you would like.

Try not to let guilt slip in, you tried something with every hope of it improving your health issues. It is not about what you can't do anymore. Turn it around to think about what you can still do. It takes a while to learn that. My issues hit when I was much younger & chronic pain has been my friend over half of my life. I am 64 yrs old now, more experience under my belt than I would like to have. I have other health issues that literally rocked my world. I have truly lived two completely different lives. But I just tell myself, hey look around there is always someone much worse off.

Since your wife just had surgery in June, you are right, you two have & are still on a roller coaster. How is your wife doing now? You know, it takes a long time to completely recover from a fusion. about 18 months out from the surgery, however she is doing then, will tell her how successful her surgery has turned out. Hopefully she is turning the corner. The 6 month mark is usually the beginning of things.

Best advice I can give you, given your circumstances learn how to pace yourself with everything you do. Instead of trying to get everything done in 1-2 days, spread it out over the week. Work of course, maybe clean the bathroom one evening, do a room at a time. Practice this & it will become your new normal.

Take care.

My entire life from infancy on was filled with difficulty and I’ve never been one to say poor me. I was the recipient of every kind of abuse from the age of 20mos to 16yrs of age. I have always known that so many others have things much much worse than I. My childhood was scarred by a babysitter who was extremely cruel but I always knew that my parents loved me and so I never dwelt on any of it.
It does a great disservice for anyone to label themselves as a victim of anything. We have all experienced bad things but if you become a victim, you give your power away. I chose to forgive and I will continue to do that. No matter what happens in life, I have to live with myself and I can’t do that if I pity myself or treat others wrong.
This present challenge has proved to be the most difficult of my life because there’s nothing I can do except accept that seasons change and the strength of youth doesn’t last forever but I refuse to be bitter about it.
It’s been an excruciating 2 weeks now with more pain than I’ve felt for a while. I see my dr on Thursday and I have to find something that can be done to reduce this. I can’t sit in a chair or lay in bed because my low back is hurting so badly and when I stand I feel that golf ball in my upper back. Hopefully it will improve soon.
I am grateful for those of you who share and listen and offer insight and a compassionate message or encouragement. It does help to know that I am not alone even though I wish I were because I hate that there are so many other people suffering so much.
My scs is not comparable with mri. I could cry today because I’m in such relentless pain. There is no escape. I hope that your all having a good weekend. I really hate to complain about hurting but I feel better when I can. So thank you for listening and understanding. Your awesome ladies!