Reflex Sympathetic Dystrophy Support Group

Hi everybody,

I was hoping those of you who have gone through the SCS trial and those of you who have had the SCS implant wouldn't mind sharing your experiences with the rest of us who haven't gone through it.

The good stories and the bad.

The doctors don't tell us about the bad outcomes and possible dangers.

I'm so afraid of even trying the trial SCS because of the people I have talked to that had spreads and worse pain.

My doctor makes it sound like I won't have to take pain meds if I get it and I noticed many people that have it are still on the same meds I take or stronger.

For me I worry that I could end up much worse and be more of a burden on my family.

Thank you very much. hugs, Lucky

They have tried twice to put a SCS in me and both times I wound up in more pain. In my opinion people who have had them put in their neck it does not work and makes things worse.

Hope this helps lucky,

Cindy

I had an SCS placed in the lowest cervicle vertebral nerves, both sides for 8 years. Though it did not help the right hand/arm/shoulder (didn't hurt it either), it pretty much stopped the progress of the spread to my left arm and held the pain in that arm down to below a 4 on the 10 point scale for 8 years (Still had pain above 6 in the right arm). I no longer have it in because I fell hard, the leads moved 5 inches down my back and medical concerns not related to RSD/CRPS prevented them from reimplanting as they would have had to do.

It was well worth it for me to have a good arm. The arm is deteriorating now and I am fighting to keep from having no good arm.

Rev.

I have my SCS for 9 years and I can say it has helped me very much.I was walking with 2 canes and using a wheelchair to get around since the SCS no more canes or wheelchair and best of all NO MORE MEDICATIONS.I may be one of the lucky ones that does not have to take any medications but a lot depends on the individual if you have any questions please feel free to PM me anytime.

Mike

First of all i dont have one but you should know its only temporary. If you get hurt or injuried or fall and it moves your in trouble. You should research it. And if you dr is pushing you get a second option especially if he is telling you no pain meds. Trust me i know what a pain a finding a second dr is but look up neurologists too. Dont let them paint you into a corner please. At least read scs, and read swimmoms story. You dont have to read my part but read hers.

Hi Lucky,

I've been the same as you regarding the questions and doubts but also wishes for relief. It came down to not enough finances for me, but it amazes me that I've never heard anyone else say that. It really amazes me. I was a little sad that I couldn't try it until I met someone on facebook that had so many problems it was crazy. She had one issue and surgery after another then another. Since then I've been less sad that I didn't have the option. Some days I think I would do it in a second if I could and some days I don't. I know your struggle is hard and I hope so much that your decision will be the best for YOU! If you do go for it, I will pray that it goes great!

gail

I've had my SCS for six years, and about to undergo my 4th revision in that time. Apologies in advance, because my story is long.

I'm with Chrissy - if the doctor is telling you, by implication or overtly, that it will leave you with no need of pain meds, alarm bells should be ringing. I'm on more pain meds now than ever before - my SCS isn't working at present, but even when it's functional I'm on a good 60-80mg of Oxycontin a day.

I don't know how your pain 'works' but mine has many elements to it - the hypersensitivity, burning skin pain, a deep burn in my bones and muscles. My SCS for doesn't touch that deep pain at all - what it does for me is deal with that hypersensitive burn on the skin. Prior to my trial and implant, I couldn't wear a sock or shoe, couldn't wear long pants, couldn't take any weight through my leg (at that stage only one leg affected). Within a few weeks of my permanent implant I was back to wearing work jeans and boots, and weight bearing with crutches.

Couple of years after ('08) my CRPS became very aggressive and spread to my left leg, so my new PM overhauled the SCS and put in new leads to cover my left leg. The new lead migrated within a week - I was vomiting badly and the movement pretty well yanked it out of place - and I ended up with CRPS spread to my back. Had to have the lead replaced a few months later, which helped my legs but made my back even more sensitive.

I've also got gastroparesis (delayed stomach emptying - so I vomit a LOT), and in 2009 I lost nearly 30kg. Partly because I was vomiting so much, partly because I was skin and bone and things were getting pulled round a bit, the lead moved again. This time pressing on nerves as well, so not only was it not working, but causing a lot of pain in its own right.

I was finally well enough to have it replaced in May last year - and it was a waking nightmare. It wasn't my doc who did the surgery; the doctor didn't use enough local anaesthetic and didn't wait 'til it had taken effect - so I felt everything. He was also incredibly rough - caused a lot torn scar tissue and nerve root bruising, so I had a weak left leg for a couple of months after. Did an awful stitch up too - so in addition to the CRPS, I have ultra sensitive keloid scars

Once it all settled, I was getting really good relief. I have an ANS/St Jude stim, and they have a small paddle lead that can be inserted without having to cut through bone. All changed in August/September last year when I fractured my spine, damaged my leads - and now I have to have them replaced again.

I'd still say - for me, it's worth it. When it is working I have close to 100% relief from the hypersensitivity and skin burn. I can wear long pants, can wear socks, can even tolerate my dogs and cat at my feet.

Laura

Laura,

I know you've been through so much and hope that your revision surgery goes well and you get the relief you need! My mouth dropped open literally when I read where you said that you could wear jeans and boots! I love boots of all kinds and that would be so great to do again. It's sometimes silly the things I miss. Good luck!

gail

Yep Gail - especially as I'd gone from having to wear shorts and "sleeping" on top of my bed covers because nothing could touch my leg. Can't wear anything on my feet these days because they are twisted upside down/inside out with the dystonia - but it was amazing while it lasted.

Can't do the jeans any longer either as my skin is so fragile the rough fabric leaves sores SCS hasn't worked since August last year and I'm back to ... - so thank you for your hopes on the revision x

Laura

I got RSD from having a cyst removed from the bottom of my foot and from there within 6 months I had burning/pain not just in the foot that the cyst was removed from but the left foot too. As the years went on and treatment after treatment was tried I was finally left with the option of the SCS or a pain pump and I decided on the SCS.

I had the surgery for the trial and that was awful because I had to be semi awake to tell them whether they were on the right never or not. I had the trail for 5 days and got no relief but on the 6th day my prayers were answered and I was finally getting relief. They removed it after about 10 days which gave me time to decide if I really wanted it (which I did). They scheduled the implant surgery about a month later. Surgery wasn't as bad because I didn't have to be awake this time but the recovery was the worst pain I have ever felt, I'm not sure I knew my feet were even hurting during that time, only my back. Since my pain is in my feet they decided to put in 3 leads instead of 2 and they are screwed into my spine so that my atving or horseback riding (possible accidents) didn't pull out the leads. Plus he gave me a lot of extra lead just in case. After I healed from the surgery I decided to get off the pain meds to see how much relief I was getting from the SCS and found that it gave me about 75%. That was about 4 1/2 years ago and as we all know, as time goes on the pain gets worse so I now have to take pain meds again but I still use the SCS, which I now get about 40% relief from it.

I do only use my SCS at night time or at least when I'm on the couch watching TV or sleeping because where the leads are located most movements change the way and the intensity of the stimulation so if I use it during the day I either get some pretty intense zaps or I constantly have to be changing the stimulation everytime I get up, sit down or walk.

This is not an option for everyone and it's not a cure all for most. I knew going in that it was not going to be 100% effective but I was ok with even 50% instead of using all those meds. And if you don't have good home support then it's not a surgery for you, because the recovery is awful or at least it was for me. I have two 4" incisions sites where the leads were put in, plus by screwing in the leads I got some spinal fluid leakage (worst headache ever!) so my recovery was a bit more then some. But if your down to this being one of your last options before taking some hardcore meds then I would say that you should at least consider it and read up on it. If I had to do it again I'm not sure I would because the surgery recovery was the worst pain ever but at this point I probably only have to consider putting in a new battery pac in a few years which won't be as bad.

I hope this helps those of you who are considering having this option done. For me on a daily basis because I do get to sleep for at least 5 hours most nights, I get a pain range from a 4-6 every day. Some days are worse then others but for the most part I do pretty well. I do still go atving, I ride my horse some and I have even walked a 5K (very slow towards the end but I did it). I can still do all that I think because of the SCS and the fact that I'm not on 10+ meds every day.

Good luck to all of you and I'm praying for pain free or pain less days for all of us!