Hi Neko,
You've asked a very good question.
I had a Nedtronic SCS for several months and it was working very well and then it just stopped working. To cut a long story very short, my Pain Dr wants to put in a Nevro system and so far the results in other patients are fantastic. You don't say where you're from but you can only get it in Ireland and the UK.
I can't wait to get it back in because I miss the relief the Medtronic gave me when it worked.

Keep in touch, let us know how you're doing, were a friendly bunch on here and we will answer any questions you have as best we can,

All the very best

Sinéad

Hey Mark - funny you should mention that...I have talked to my pain doc repeatedly about this forum and all of you SCS'ers...and I think it would be awesome to get some of you from this forum to post over there at times once we get it up and running. The whole goal is to have a easily accessible forum in which both patients AND Drs can post procedures, experiences etc. I am really excited to be doing this with her - and that is the main reason I have not been able to put my video up here. I am not sure what the "internet rules" are...but I would LOVE to be able to have a visible link back to this forum, if possible. You guys are a great bunch...and your experience and compassion for others is very heartwarming

Oh yea - and thanks for the warning Mark...having weaned down once before - I have a bit of a notion as to what lies ahead. The good thing (for me at least), is that the one opiate I am still on is Nucynta...which has NRI properties, and thus acts somewhat as an antidepressant as well as pain killer. That med alone has made tapering off the Opana a lot easier! But it is always good to know there are others here who have been through it all - and if the time comes to stop all of my meds, I know where I will be coming for support

That sounds so VERY exciting! To be able to post with physicians who actually DO these implants!
Wow!

Thank you all so SO much for all of your replies! What an amazing group you guys are!! I honestly expected maybe one reply, so this is really great! I'm a member of another support group that has gotten to the point that if you dont want to try exactly what they are telling you to do, they really kinda make you feel shunned! One person has even said 'I just cant understand not wanting to get better because "" will do that, yet you're not willing to try it.' Pretty harsh IMO! I mean, of course I want to get better - more than anything in the world, but that doesnt mean I can afford or am willing to try things I'm not comfortable with!

I've learned that I really do need to start doing a lot of research - you guys have shown me that I'm pretty much clueless about SCS!! I really only knew the bad 'dont get that, it'll make your RSD spread - it'll get worse - it wont help - it fails shortly after getting it - and many more negatives' so I was scared to death of it!! I'm so glad that I took my Dr's advice and asked for the good to go along with the bad!!!

I'm certain that I'll have a million questions as I start my research journey, so thank you again for making me feel so welcomed and making me feel comfortable asking for help/guidance/advice.

My pain is through the roof tonight, so I had to take some of my stronger meds (which I hate) and its made me feel a bit wonkey. I'll be back tomorrow to read through all of the responses again and starting putting together my list of questions as well as answer any questions that were asked of me.

Again, thank you all SOOOO much!!

~Trisha

Sorry you are having a bad day with your pain Trisha, hope tomorrow is better for you.

Glad you came here for insight, there is a great group here and they (we) will all be here for you when you have your questions.

Take care -
Nanc

Hi Neko,

Sorry you are having such a tough time of it lately.

This is a great place to come for feedback and information from people who have had SCS for various kinds of disorders.

In evaluating answers to your specific question about responses to SCS with the diagnosis of CRPS/RSD be very careful that the responses you review are from those who have been diagnosed with CRPS/RSD. You may also use your search button to look for people with the diagnosis of CRPS/RSD who have had spinal cord stimulators implanted.

I had a great response to my Boston Scientific Stimulator. I was on top of the world for about twenty months when it failed and left me with debilitating spreads. (You can read some of my prior posts to learn of the specifics) The point is that reading people's stories is a good way to evaluate if the risks involved are worth it for you. Just be sure that you compare apple to apples since the failure and spread rate for CRPS patients is high compared to that of Failed Back Syndrome, for which SCS received approval by the FDA.

Even still, spreads caused by SCS are frequently treated with the implantation of another SCS to control the spread pain. Some view that as a viable option. Only you can decided.

I recently found this link that is helpful, particularly when evaluating the effectiveness of a SCS with a diagnosis of CRPS.

http://painsandiego.com/category/spi...stimulators-2/

It is also instructive to request scientific evidence of the safety and effectiveness of SCS for CRPS from your implanting physician.

Best to you in whatever you decide!