I am almost finished with my trial with Boston Scientific Precision Spectra and it has been pretty amazing. I see my doctor again next week to take it out but am still a bit nervous. My pain level has gone done and is more consistent than it was with blocks, but I have to turn the intensity to 30-40%. The biggest thing for me is that the shaking in my leg has stopped and I'm able to put my foot done when I'm exercising or doing therapy. The hardest thing other than the wires on my back is when I'm switching programs and the stimulator stops for a couple seconds. The burning comes back with vengeance, although it's a small trade off if its something I get used to. We're discussing having paddle leads installed so it doesn't migrate. Does anyone know about this? It's expected to be more of a invasive surgery with a pretty long recovery time. I suspect most get frustrated during this time and want it out shortly after but I'm trying to think of the big picture or the four days of relief I've had. How do you expect this machine to limit me in the long term? Will I not even notice it there after a while or will I have to live with it as best as I know how? My biggest worry is that technology is always rapidly evolving so I don't want this form of therapy to be obsolete in five years, which is how long they say I'll have this in me if all goes well. The problem is I don't have that time to wait, since I'm a student on the verge of completing my studies. What questions should I ask Monday about the permanent surgery? It's tough because the first part is recovering from the back, spinal cord part then on to my left leg. I'm hoping that I'll be able to take pain medicine that actually work for me when I'm down to a human level of agony. Really, I just need some support and reminder of the possible benefits because in this happy time, I feel scared. Thanks for listening

Hi NYM,

That's great you got such relief from your trial!

Surgery of any kind is frightening, being cautious is smart! I can understand your concerns about technology changing. This new wireless one placed by injection sounds intriguing and you can even get an MRI with it. I have no idea if it is used for CPRS but it certainly seems more appealing at first glance than traditional. IT might be something to look into.

http://stimwave.com/mobile/

Here is an article about early use of SCS with CRPS. Theoretically it makes sense to avoid more entrenched pain changes.

http://rsds.org/wp-content/uploads/2...-treatment.pdf

SCS is not something I can personally speak to or have considered but you have my support no matter what you decide. Let us know what happens and when/if you have your procedure.

Sending healing vibes,

Thanks littlepaw! I can always count on you to be the first and sometimes the only one to show support, as is the case now. My pain level before never went down below 8 and easily crept up more. Walking and putting weight on my foot without brace does not increase pain but is strange since I can't remember the last time this was true. I climbed some stairs yesterday, which increased it to 7 from its very usual 6 these last seven days. I cannot say I've been below a 5 or 6 this week, but am glad it hasn't gone up much if at all. Do you think the potential for less than a 5 pain is there with the permanent? I don't want to be greedy and can function with a 6 so it's great either way. My only concern is that I won't feel this normal for months until the incisions and back heal. It might not seem worth it just to go down 2 on the pain scale but it is a significant 2 and 2 that can get me back on my feet - literally. The StimWave sounds great, almost too great, so I'll keep an eye on that and hope it becomes available soon to the moss public and hospitals. I'd love for more people to chime in on questions you have for me to ask myself or the ones I should be asking the people in charge of my care...

I don't really have much to offer other than I'm so glad this is helping you.

I have SFN and did a Medtronic trial in Dec 2015....it didn't help me enough to have a permanent one put in but I am truly thankful that it helps a lot of people get back on their feet (in your case) and be able to have a better life.

Take care and keep us posted

Debi from Georgia

I have heard both positive and negative stories. It's a personal decision. I would definitely do some research about the possible benefits -vs- the risks. I would ask the doctor as well. if he is honest he will discuss both openly. This forum has a sticky thread on the SCS, is you want more personal accounts. I chose not to get one, but I was improving with therapy and medications. I also know of a man that had been bed ridden for years and the SCS was a life changer allowing him to have a quality of life he has not experienced in years and to participate in physical therapy. What ever you decide I hope it works out well for you. ~mac

I'm glad to hear that you've gotten some good relief from the trial. As others have said...it's a very big thing to consider and everyone has to make the decisions that will be best for them regarding their treatment. My advice is always to do as much research as you can to get both the pros and cons of the permanent surgery and then make the decision with eyes wide open about the risks and benefits both. I personally have not chosen to pursue this course of treatment but many have and are very happy with the results. If this works for you and gives you relief then that is wonderful...just make sure you know the risks and feel they are worth it. Sometimes you have to risk the getting worse for the CHANCE to get better...and if the trial has gone well then hopefully that's a good sign for you. Take care and keep us all posted.

NYM,

You have the support of so many of us here. I too hope all goes well for you. I have been waiting to hear a success from someone using the SCS since I have had 4 different doctors suggest it to me. I keep going back and forth about going ahead with the trial but I am so afraid of going in for another surgery, especially one involving the back.

I am so glad that the trial has worked well enough for you to be able to get back to walking. Whatever you decide to do, we are here to stand behind you. No matter what it is you decide, I hope things work out for you and you are able to continue on with your studies.

I had successful SCS implantation for CRPS last year. I have posted on the pain management site so don't want to bore people by repeating myself.

It works fabulously for the CRPS. Unfortunately, in the last year I've also gotten hit hard by peripheral neuropathy and the SCS doesn't help a bit.