Smae i am so sorry for what you are going through and that you are in so much pain. I remember reading your post before i went for my scs trial and you did so well at your trial. something has to have gone wrong have you been in touch with your pm doctor? i know you have great support from you mother but I am sure some of the guys here will be able to advise you better than me. really pray that this turns around for you soon

After my surgery, as you know, they waited a full two weeks to turn on the stim, wanting to get beyond the pain of surgery before trying to tweak pain with stim so the stim sensation was directed precisely upon the nerve pain which was the target. With your complications, that may be the reason for the delay, and the delay is time which will pass moment by moment.

I pray for you that your time seems to go by quickly and that soon you have the blessing of the stim to bring everything under control.

God bless you,
Mark56

I see this post was done in September but I had an AH HA moment. I had increased pain when they took the trial SCS out and I could not figure out what is going on. It made no sense to me, I did not even bring it up to the doctor, thinking, maybe its just a bad patch for me and it will subside. My trial was the 19th of last month, and lasted five days. I had a very successful trial. But since then the pain has been alot worse. Just wanted to say I appreciate that post, thank you.

It's been 3 weeks since surgery.

The surgical pain is all gone as far as I can tell. It's just the normal old pain.

I had 99% pain relief when they turned the stim on... it was when I went off the pain meds that the pain came back. So unfortunately it seems too much of a coincidence and now I don't know what to think. Do I go see my surgeon and have this thing removed, or what? Who knows. Blah.

I see my pain management doctor on the 15th, but he won't be able to advise me much on the SCS.. will just lead me back to the surgeon. And I can't see him for at least a month.

Hi Sarah
I am only due to have my scs done on thursday so I dont claim to be any expert but my dr has already told me he will not be changing or lowering my medication for at least 3 months as everything needs to settle first. This was a big procedure you went through do you think you may have come off the pain relief too quick? I know you have other health problems but maybe you need to keep up the pain relief for another little bit. Also from what i read most of the people on this forum who have the scs still take pain relief but just not as much as they did before the scs . How about putting in a call to the surgeons secretary and ask her to put it past the surgeon Its only been a few weeks since your scs and i think you should still be on your pain relief

Again i know i have not have mine done but it breaks my heart that you are in so much pain atm. pain drains us mentally and physically so please make the call and dont suffer

As for the person on fb i think you will always find people who have had good and bad experiences with the scs, even on this forum you get to read both sides. You did do your research i read your thread before i went for my trial so please don't doubt yourself you did the right thing. but please try and remember how good the trial was and how good you felt I really think you can get back to that but maybe with the help of some more medication for a while. If you are anything like me you have no been moving for a good while with this pain so all those muscles need to build more strenth and they will hurt the more you do things and this could be adding to your pain.

Sorry for going on and on but I really feel for you and hope to god you get some relief soon.

Take care xx jenna

Sarah sorry to hear that you are still in pain.


Im now 4 months post surgery and I am still on some pain meds too.

The stim helps with the burning and stabbing pains that I have in my legs, but it doesnt do much for my back at allwhich I was a bit disappointed with too.
I thought that once I had it I could sit for hours, because I cant generally, and not have any problems that the stim will help that. Unfortunately, it hasnt. Im not saying its not working, it is, and I have great relief in my legs but not my back.

Maybe as Jenna was saying , did you come off the meds maybe too quickly. You did have the paddles done and Im sure that takes a lot longer than 3 weeks to settle in. My Dr did tell me it can take up to a year for it to be REALLY settled in and the leads/paddles to be scarred in. Maybe you should go back on some of those meds? especially when I read that you had been out of the house for some hours , more than you have done in months. Just a suggestion.

I do hope that you will be able to get the stim back to working like it did when you could get out and about.

Take care

Jackie

Yep, talk with your pain management doc about whether to do some of the pain management assist with meds on top of the SCS.

z,
Mark

I just responded to another post so I feel like I'm repeating myself.. getting confused trying to keep up the same conversation in two separate threads.

I am still on narcotic pain meds.. I went off of 3 medications, but am still on some. One pain med and some other meds for other conditions.

I don't want to be on that fentanyl patch for the rest of my life. My surgical pain is all gone so I don't understand what good it will do to go back onto that just to work down again later... if my pain is not surgical pain, but my neuropathic pain.. I'm going to have to deal with this sooner or later, right?

I am beyond frustrated.

I see my pain management doctor on the 15th and I plan to talk to him.. but I don't imagine we will find much of a solution. The only solution people have is "go back on the meds" and I just can't do that. I absolutely cannot risk damaging my kidney. That is too important to me. I'm already on a narcotic pain medicine and take it every 4 hours religiously... or my body screams at me. And that isn't enough.

and for hoped for relief from pain my friend,
Mark56

I hate to be lazy, but I can't possibly type this all out again. This contains some information that I've already posted here, but this is what I found out today:

I am beyond ticked off. Ugh.

I know I've written about this, but am going to give a short recap.

In the last year, I found out about a few health problems that I have developed. There are two that affect me the most. One is POTS (postural orthostatic tachycardia syndrome). The other is peripheral neuropathy. I have a pretty severe case, and deal with a LOT of pain--it is constant.

In October I had a trial surgery to test out a spinal cord stimulator. I had 100% relief for the three days I had it in. It was AWESOME. I got the okay to move forward with the process, and the permanent implant was placed on November 10th.

On November 17th, the SCS was turned on. As we were programming it, I was having such a hard time. I couldn't feel it in my feet, so I didn't know what to say when he would ask me if it was good or not. I could feel it in my legs and halfway up my stomach... but not where I needed it most.

I didn't think TOO much about it, because I have nerve damage in my feet. I struggle to feel any sensation except pain due to all the numbness. We finally settled on some programs, and I went on my way.

Day after day, the pain just kept getting worse and I became more frustrated. Wasn't this thing supposed to be helping me? It's supposed to help 50-70% with pain relief, so I wasn't stupid enough to think my pain would be totally gone... but I wasn't getting ANY relief!

My pain management doctor thought that it was probably because my family doctor took me off three medications at once, so he put me back on the fentanyl patch for pain. That isn't helping at all.

Everyone around me wanted me to see the rep from Boston Scientific and get reprogrammed, but I just KNEW that that wasn't the solution. I could tell that the problem was NOT that the program settings needed adjusted. It's that I can't feel it at all, no matter how high it is turned up. That means that it is probably in the wrong spot!

Finally someone listened.

So today I went to the clinic and had an X-ray done. Ugh.

When I did the trial, they placed the SCS at the T8-T9 area of my spinal cord. I had 100% relief (with medications).

My doctor pulled up the X-ray from the day the permanent implant was placed. It was partially in T8, but only halfway. It went to T11 or T12, which explains why I feel it so high in my body (up into my stomach and back).

So it was placed incorrectly! It is just BARELY off--1/2 of T8 isn't covered. I don't know anatomy and I don't know if that T8 area is where the nerves are that reach my feet or not.. but that's the only difference is that all of T8 isn't covered and I am not getting relief.

THEN... the x-ray from today. Now it's from T9-T11/12. So after it was placed (in the wrong spot), it MOVED.

That isn't supposed to happen.

There are two options for a SCS--leads or paddles. Leads are wire thin and require a less invasive surgery. The paddles are thicker, and bone must be removed to fit the paddles into place. I had the paddles placed. They aren't supposed to move. They are supposed to be secure. They tie the paddle to the bone to make sure it doesn't move until the scar tissue forms.

So now I'm stuck.

I had the surgery.. it was painful and expensive.

It wasn't placed correctly. And then it moved.

After surgery, the nurse told me I had NO restrictions as far as physical activty went. I knew better. I have talked with a lot of people who have SCS implants. They say that they can't lift, bend, twist, etc after surgery. Even though the nurse said that I was free to go on as normal, I was EXTREMELY careful in what I did each day.

So either I did something I wasn't supposed to and it moved (which I can't imagine---I can't tell you how careful I was!) or it wasn't secured properly.

GRRRRRRRRRRRRRRR!

So now what do I do? I have no idea.

I have surgery next Wednesday and am hosting a baby shower on Feb. 19th.. so this is going to have to be put off until March. That SUCKS. I am in SO much pain and am miserable and discouraged. I'm supposed to be BETTER by now, not worse.

I haven't met with the surgeon yet, but it looks like I have 3 options:

1. Leave the SCS in and don't use it. It would be the least painful and least expensive right now, but leaving it in will prevent me from ever getting an MRI. I was okay with that when it was going to work.. but if it is going to be turned off and still limit me, I don't like that.

2. Have it removed. Probably very painful and probably expensive. And then I'm back at square one for pain relief. My only other option was a pain pump and we don't want to go there because I only have one functioning kidney.

3. Have it fixed. This is the most logical, but not an easy fix. It will require another painful surgery. It will require recovery time. My mom will be back at work, so I won't have anyone to help me. It's expensive. And how is this time going to be different? I'd hope he would get it in the right spot.. but how do I keep it there after surgery when I was SO careful? I laid around and didn't hardly lift a finger. It STILL moved. So what do I do?

I don't know. I am extremely frustrated and just want to cry.

I am sick of this pain. I'm sick of one thing going right and four going wrong. I'm sick of being stuck inside and JUST as I was getting a taste of freedom, it's going to be taken away from me. I'm upset that I won't be able to join the new Bible studies at my church and will have to stop going on Sundays. I'm frustrated and hurting and upset. Grr.

I don't know what is going to happen. I don't want to look back in a year and have this be the second surgery I wish I had never had. I didn't go into this blindly.. I researched it and thought about it and prayed about it and I was confident. Surprise surprise, it had to go all wrong...

BLAH!