[liz0323]

So, I haven't had crps all that long compared to a lot of people on here. I got diagnosed 5 months ago, but the issues started 7 months ago. I had surgery on my right wrist for a torn ligament which led to crps in my entire right arm, which is now spreading to my left side. We did 4 stellate ganglian blocks, which didn't do much good except for the few hours afterwards when I couldn't feel anything... was like heaven lol. My pain management doctor is suggesting we start the process of looking into the scs. I've googled the hell out of it, but now I want to hear some real stories. Does it do as much good as the dr's promise? Mine said it could end up ending all my pain and I could return to work. This is a big deal as my job was mainly focused on using intricate pieces and small parts to build wiring and I'm physically unable to do it ( I have six months before I can no longer return to the company) . I'm scared of the surgery though, and don't want to get my hopes up like I did with the nerve blocks to have it not work. My internet research has left me confused. Seems like people either have total horror stories or say it's amazing.. does anyone have their own experiences they're willing to share? Any opinions or advice would be appreciated... I'm also wondering if anybody has had one in for a long time and if there were long term complications. Since I'm only 26, I'm wondering what would happen if I need it to stay in for the next fifteen years. Again, google and even the dr didn't have much information on that question. So, I'm all ears here. I appreciate anyone who takes the time to answer me and share what they think. I'd love to be off the meds and pain free... but is this the answer?

[Mark56]

My implant was July 2010. Since then I have been able to resume my career as I was successful weaning off of the pain meds..... all of them. My story starts up top in the stickies you see at the header to this forum, or you can click here http://neurotalk.psychcentral.com/thread117854.html

The story continues beyond that posting into a currently running thread by the same name with a 2 in it.

All nerve pain sought to be remediated by the SCS was handled that way. Since my descent into spine problems was trauma related to a car wreck, I have had a good many other surgeries, culminating just a week ago in still another fusion of my cervical spine.

The real trooper about all of this process has been my SCS. It is used by me 24/7 and I feel wonderfully blessed to have it.

You are bound to have questions beyond the mere postings, so have at them as you experience them. Post them just as you did and a whole gaggle of people..... good people..... will come along to share your pain, give answers which are helpful, and talk about the ups and the downs.

In the meantime, may today be a better day for you because you have located us!

[Nanc]

Hi liz! First of all, sorry that you are having to deal with CRPS. I have had RSD/CRPS for 23 years now. I had two SCS's implanted in Jun 2011, cervical and thoracic. I had a revision on the thoracic one in November 2011 (changed to paddle lead and battery moved to right, front side). I just had both units removed on Thursday because they were no longer effective, the thoracic leads migrated again, the battery that was moved was now twisted and hurting me and I had lower back pain/spasms when they were on. I am no longer able to work as I have nothing to help me with pain or with functioning better.

I had St Jude stimulators and they told me that the batteries should last 10 years. There is no way they can guarantee you with 100% pain relief and/or returned functionality, that is not realistic. When I had mine implanted, they told me that they shoot for at least 50% and to me 50% improvement is huge. Even though I just had mine removed, I do not regret getting them. You see, I have RSD/CRPS in my face, hands, shoulders, feet, left leg and left arm. I could barely use my hands and I was a finance and hr manager...had to use my hands constantly. With the SCS's, I was able to get thru another 1 1/2 years of work...I would not have made it without them.

The good thing about the SCS is that you can have a trial to see if it will work for you. Since I have RSD/CRPS on both sides, upper and lower, they decided to do the trial on my left side. It was a good idea because I could compare one side to the other and I got 80% relief. Getting the SCS(s) is a last resort. We exhausted all other options and I cannot tolerate ANY of the medications used to treat RSD/CRPS symptoms or pain. You must be aware of the risks when you have RSD/CRPS and having any procedure done, you risk spread. I took that risk as I felt the benefits outweighed the risks. I don't say this to scare you, but to give you things to think about.

I know there are so many horror stories out there and when I was researching it I focused on the positive stories. I relied heavily on this site and the info I found here. I asked questions here and MANY questions to my dr until I was comfortable with MY decision...which is what you need to do. I cannot and will not advise you to or not to it, I can only share my story with you. However, I would advise you to exhaust all other options as this is invasive and make sure you are 100% comfortable with your decision...and with your doctor.

I hope this makes sense...I am still recovering from surgery

I wish you all the best,
Nanc

[liz0323]

Well, as of right now I'm definetly leaning towards doing it. At the minimum, I've decided going through the trial is worth it. I discussed the risk of the spread with the dr, but as its already spreading into my left arm I think that making one area stop hurting might be worth it. I take a lot of medications for the pain, but they don't ever stop the hurting. My pain is never gone completely, and I'm very worried about never being able to stop with the pain medicine. I don't want my stomach to be destroyed in 20 years from all the pain killers. It just seems like there are so many horror stories about going down the drain with the need of eventual increases in medication and the strengths ( Even though I rely on medications now, The land of super heavy duty painkillers that people end up on seems like such a bad idea ) . The same goes for the scs though. I've found more terrifying stories than positive ones. I didn't know if that was just because angry people tend to post more, or if that was a clear demographic of results. The worst one I saw was ending up paralyzed and incontinent.... I figured asking the community of people who have been there would be best. Has anyone had success without complications or are there ALWAYS complications to be expected?

[Nanc]

Originally Posted by liz0323

Well, as of right now I'm definetly leaning towards doing it. At the minimum, I've decided going through the trial is worth it. I discussed the risk of the spread with the dr, but as its already spreading into my left arm I think that making one area stop hurting might be worth it. I take a lot of medications for the pain, but they don't ever stop the hurting. My pain is never gone completely, and I'm very worried about never being able to stop with the pain medicine. I don't want my stomach to be destroyed in 20 years from all the pain killers. It just seems like there are so many horror stories about going down the drain with the need of eventual increases in medication and the strengths ( Even though I rely on medications now, The land of super heavy duty painkillers that people end up on seems like such a bad idea ) . The same goes for the scs though. I've found more terrifying stories than positive ones. I didn't know if that was just because angry people tend to post more, or if that was a clear demographic of results. The worst one I saw was ending up paralyzed and incontinent.... I figured asking the community of people who have been there would be best. Has anyone had success without complications or are there ALWAYS complications to be expected?

Hey liz! It is good that you will be able to do the trial, at least that will give you a good idea of what to expect and if it feels beneficial. I totally understand what you are saying about medications, they can be so harsh and harmful. I cannot take any of those meds, so I am not dealing with that part of it, just trying to deal with the pain. My pain management dr recommended a pain pump, but because of my numerous allergies, my PCP and I decided it was not for me.

I think that angry people do tend to post more. People that are feeling good are less inclined to post...in my opinion. You will find horror stories with pretty much everything. You just need to weed thru them and the good stories to help you decide. I have read good stories on here and I do not think there are ALWAYS complications. Hopefully some of those folks will chime in to help you.

Is your dr looking at putting in a cervical SCS or thoracic? If thoracic, I would recommend that you get paddle leads instead off percutaneous leads, paddles are less likely to migrate.

Good luck to you!
Nanc

[chrelsey]

Hi Liz!

My permanent implant was three weeks ago tomorrow. I, too, had read all the horror stories, and was terrified at the prospect of having something permanently implanted in me that could potentially cause more problems than it solved.

During the trial, I noticed about a 75% reduction in pain. I was able to rejoin life for those four days, wasn't limping anymore, and would actually forget that it was time to take my pain meds.

I had the perm implant on Dec. 24, and so far I am experiencing 60-75% reduction in my normal back pain. I have been able to stop taking Oxycodone, and have moved back down to just taking Hydrocodone.

Bottom line - I am very glad that I did it!

I wish you the best as you move forward, and hope that you will let us be a part of that journey with you!

=Becky

[ing2foru]

Originally Posted by liz0323

So, I haven't had crps all that long compared to a lot of people on here. I got diagnosed 5 months ago, but the issues started 7 months ago. I had surgery on my right wrist for a torn ligament which led to crps in my entire right arm, which is now spreading to my left side. We did 4 stellate ganglian blocks, which didn't do much good except for the few hours afterwards when I couldn't feel anything... was like heaven lol. My pain management doctor is suggesting we start the process of looking into the scs. I've googled the hell out of it, but now I want to hear some real stories. Does it do as much good as the dr's promise? Mine said it could end up ending all my pain and I could return to work. This is a big deal as my job was mainly focused on using intricate pieces and small parts to build wiring and I'm physically unable to do it ( I have six months before I can no longer return to the company) . I'm scared of the surgery though, and don't want to get my hopes up like I did with the nerve blocks to have it not work. My internet research has left me confused. Seems like people either have total horror stories or say it's amazing.. does anyone have their own experiences they're willing to share? Any opinions or advice would be appreciated... I'm also wondering if anybody has had one in for a long time and if there were long term complications. Since I'm only 26, I'm wondering what would happen if I need it to stay in for the next fifteen years. Again, google and even the dr didn't have much information on that question. So, I'm all ears here. I appreciate anyone who takes the time to answer me and share what they think. I'd love to be off the meds and pain free... but is this the answer?

Hi Liz!

I am mostly a lurker on these boards. But I thought that I would step out & tell you about my SCS. I had my permanent implant on November 14th.

My story is that I have CRPS in my left foot & it is moving up my leg from a tendon repair in my ankle. I couldn't even walk or wear a shoe because of the pain & swelling. People would see my foot & I could hear them cringing under their breath. I even heard them say ouch or oh my that looks painful. If they only knew how much it hurt!

When I was diagnosed with CRPS, I had already been on Lyrica, Cymbalta & Trazadone for what I now believe is CRPS from a gallbladder removal. I was unable to eat for 5 years because of the pain that I had in my "non gallbladder" area. It still felt like I had it in & had phantom gallbladder attacks every time I ate. So, this is why I was already on these meds.

Once I got to my PM Dr., he started me on Exalgo 12 mg because of the amount of pain that I was in & nothing was helping the pain. We decided to treat aggressively first because we didn't want it to get worse. So, I started the process of getting the SCS. During the wait, I started getting the spasms that come along with CRPS. The spasms were pretty bad & he put me on Loreazepam & Baclofen. Then it came time for the trial. He had me in surgery the same day it was approved. He said that he was really worried about me & wanted me in as fast as possible. The trial was amazing! I was actually able to put a slipper on & take some steps! So, we decided to go ahead & do the permanent. Once again, I was in the OR within hours of the insurance company approving it. I am going to tell you that the surgery was tough! I want you to know everything about my experience, so you are aware of what could happen. I woke up in a horrible amount of pain & having spasms like no other! My Drs nurse stayed by my side the whole time holding my hand while I was crying & having the spasms. He was in the recovery room with me as well........I have an AMAZING PM!!

So, the recovery from the surgery went well. The initial pain from the surgery went away. For me, the battery is taking some getting used to. I am not quite comfortable with it just yet. However, my pain is so much better that I have one shoe that I can wear & I am walking with the use of crutches! I am not sure that I will ever be completely pain free or off any of my meds or not have any spasms, but the SCS has done wonders for me! If I had to do it over again, I would!!

If you have any questions, I will be happy to answer them. But, the decision is yours to make. I am not going to tell you that you should or shouldn't get it. It may not be the right thing for you, but then it could. Just know, that for me, my quality of life right now is better than it was if I hadn't done it.

Melissa

P.S......sorry for the novel!

[Rrae]

Thank you for sharing your testimony and for coming out of 'lurk' mode! My heart goes out to you, especially about the spasms, b/c that's been my main battle and I know how awful they can be.
I just want you to know how appreciative I am (and probably many others as well) that you've shared your story.

Despite the battle(s) that you've endured to get where you are today, I am SO happy to know that the SCS is doing a good thing for you.

Rae

[Rrae]

Welcome Aboard! It's great to have you.
You've surely come to a great place for 'real people' talk.
You'll get a realistic array of testimonies here.

I agree with what Nanc said about the people who have had problems with their units. They are more prone to coming on board to seek input as opposed to those who have had no problems, thus no need to seek help. But no matter if the stories are good or not-so-good, it's good that they have come on boards to share and it's good to know the realistic array of testimonies.
I am just so grateful to have this site to come to because the support here is wonderful and I am so grateful for those who have stuck around to continue sharing their experiences for the benefit of new people who come here.

It looks as tho you've done much research on this which is very wise. Even tho you didn't seem to get a whole lot of relief after your SG Block Injections, the fact that you got 'some' relief is a good sign that you'll respond favorably to the SCS. Take advantage of the trial! It will give you a pretty accurate idea if this is right for you.

The SCS can be a great avenue to getting a better quality of life back. Certainly the case with me. I get about 70% relief from the horrible burning pain in both legs and lower back. I would have lost my mind if I had to go on battling the raging RSD. Yes I've had to go in for a revision and yes I battle spasms, but to me it has definitely been worth it not to have so much pain as before. Most SCS's need ongoing maintenance, especially at first, but once the programs are set right and if you've been very careful to mind the post-op restrictions, you could be the next great testimony.

Please stick around as you go through the process. We'll be with you the whole way.

Rae

[sarahdgoldman]

hi
i had my st. judes, SCS implanted two and half years ago, i had laminactomy done in 2005 that left me with failed back syndrome and neuropathy in my L5, S1. I was 26 and living in constant pain. I am really happy that i implanted the SCS and have no regrets. It definately should not be a decision taken lightly and does change your life for good and bad. I was experencing extreme nausea post implant surgery for roughly a year but that subsided. Recently i have been experiencing headaches, migraines and i do think the SCS somehow is responsible. but overall it is well worth having it. I can work and function and instead of living on drugs, and rarely need any pain killers to get by.
Good luck,
hope it works out for the best.