My Location, and like Smae, get coverage all the way down, what a buzz.......

Lonnie, I hope and pray they get it right for you!

Mark56

Lonnie,

Sorry it has taken me so long to respond. I've really been struggling with pain and other symptoms and have been avoiding NT. I guess I was so hopeful and excited after surgery that now I feel like an idiot for thinking it was truly that easy. I've learned my lesson.

I was doing well, but the last week has been horrible and I don't know what to think at this point. I don't feel like the stimulator is really doing much at all and it is breaking my heart.

I am in South Dakota... so in the middle of nowhere. Never really see people from around here on these websites! Where are you from again?

I also wanted to say that if I am not on these forums responding, you can -always- send me private messages. I don't always get around to responding every single day... but I do eventually see all of those. Sometimes the forum threads don't get caught so I don't respond to them.

Hope you are doing well.

Sarah

Hi Sarah,
I am so so disappointed for you that the pain is so overwhelming. Perhaps these stimulators aren't so great after all. Maybe better for some than others. I don't suppose the rep could make an adjustment for you that would improve things. It seemed to do the trick when you only had the trial in. Could the pain be from the surgery itself or is it the same pain as before the implant. I'm sure you are having some pain from the surgery so maybe it will slack up some as the surgery healing progresses. Lets hop so. It was so good of you to respond when in so much pain.

I'm located in souther Ohio right against Kentucky. I had never even heard of the stimulator before reading this site. Relax and we'll touch bases again when you're doing better. Stay positive. - Lonnie

I'm disappointed myself and quite unsure of what to do or where to go from here. If I have to stay on strong narcotics the rest of my life to control the pain, I would have done that WITHOUT such an expensive surgery. My surgical pain was 99% gone when I went off the medicines, and I was having NO pain in my feet... so I don't think it was surgery pain at all. I was feeling perfect... and then I went off the fentanyl and crashed and burned.

I met someone on Facebook who has a SCS and hates it--it doesn't help her and she says that everyone she knows with one has had an awful experience.

I was surprised. I mean.. I've done a lot of research and read a lot of personal stories. Most people I know have had wonderful experiences with a SCS. My trial went so well and I never imagined this wouldn't work for me long term. Maybe I was just blinded and only saw the positives because that's what I wanted to see. I don't know. I don't at all want to scare anyone away from getting a SCS so I hesitate to even talk about this... I am just at a loss. It worked perfectly as long as I was on the meds. Meds alone didn't cover all my pain, but the combination did wonders and I felt amazing. Now I'm off the meds and hurting. I can't stay on meds for the rest of my life because I only have one good kidney... so I don't know what option I have now.

I guess time will tell... I see my PM doctor on the 15th so I'm going to talk to him about it... but until then I am just disheartened. And I wish I could talk to someone who understands, but almost everyone here has had an awesome experience with their simulators. I know a few people have had them and had them removed or they didn't work but for the life of me, I can't remember who those people were! I'll have to do some searching. Maybe I can find someone to connect with. And maybe in time this will get better.. I have no idea. I just know that my surgical pain is gone as far as I can tell-I healed quickly with no complications.

I know one person (well, at least one.. can't think right now of every person I've ever met) in OH, but I have a LOT of friends that I have met online from KY. Tonight, two friends from KY were talking with me and one of them told me that I need to move there... haha. I wish! I'm tired of South Dakota--it is tooooo cold here!

Anyway... I hope you are doing well. Thank you for taking interest in how I am doing.. I really appreciate it. And I hope your experience is more positive than mine has turned out to be. I am grateful for all of the friends I have who have had such great experiences with their SCS. It is a wonderful thing when it works correctly.

Sarah

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 its great that after 3 weeks your post surgery pain has subsided. I will say although I just had the leads put in, I didnt find that the pain went as quickly as that. But then we are all so different arent we.

Like I was saying on a previous thread, I dont get 100% relief from my stim, in fact I probably get about 40-50% in my legs for burning and stabbing pain. But not for my back, which was my first port of call when I first started this back problem. I never did think I would get 100% not that I was thinking it wouldnt work, but my Dr did explain to me that its not always great for back pain , but more for pain and burning in the legs. ALthough I was a bit disappointed to see it didnt help my back.

Im sure there are some people on here who can relate to you too. I am still taking pain meds. I cant see me coming off them in the foreseeable future, although I have cut down. I dont use my patches anymore. Im just wondering if perhaps your Dr might be able to prescribe you with some meds that possibly arent as strong but that might take the edge of your pain. And then with the combination of the meds and the stim you may get back to some form of relief.
Just a thought. Im sure there must be some medication that you could have that might be easier on your body but also help with the pain........

Am hoping that you get the relief very soon too.

Jackie

I am kinda the oddball here having fully withdrawn from pain meds after the SCS. Sure, I get flares, and I really TURN IT UP when that occurs, then wonder whether I should have some pain management meds, but just don;t want them. Turn it up some more to the point of intolerable, and it overcomes the spike. Then after a while, turn it down again.

Sarah, I hope and pray that your situation becomes more bearable and soon,
Z,
Mark56

I am still on pain medication.. every 4 hours. I went off the fentanyl patch, but I am still on meds.

I don't want to go back on the patch or other strong narcotics because I am terrified of ruining my only good kidney. That is why I sought out this surgery in the first place...

I am on pain meds, and using the SCS... and combined, it isn't helping hardly at all.

for my friend Sarah, and that relief from pain will be sent your way.
Mark56

Hi all, looks like this thread has been a little quiet since late last year. Some of you might know me from the Peripheral Neuropathy board. SCS is something that I wasn't aware of as an option until my pain management doc suggested it last week. I've tried scads of pharmaceutical, supplemental, topical, mystical, and perhaps even goofy* strategies. I'm finally trying one of my two last hold-outs this coming week: Lyrica.

But in case that doesn't help either, I've been reading here and elsewhere to try to get up to speed on what SCS is so that I can make an informed decision. What I'm not looking at is the "informational" CD from Boston Scientific that he gave me. Sales pitches--not so scientific. haha

I have a ton of questions. Here's one for starters: what am I missing? I've been experiencing/reading about PN for almost four years now, and I don't recall seeing SCS in the list of treatments for PN, not on the Johns Hopkins, Mayo Clinic, NIH, etc. websites...is that because it isn't really that effective for PN?

Even in this thread, I'm not sure how it ultimately turned out for anyone. Has anyone here had success treating PN pain this way?

Thanks all. You seem like a nice crew here.

*Goofy - can you believe I even tried Nicorette gum because it seemed like my PN started right after I quit smoking? Hey, I had a theory, and at least it was cheaper than buying a Rebuilder.