Spinal Chord Stimulator

Description

Notes

Candidates for this treatment undergo a trial consisting of temporary implantation of an electrode over the spinal cord. If the temporary electrode alleviates pain by at least 80% compared with the patient's starting perception, then a permanent stimulator and pulse generator is implanted under the skin. When connected, the stimulator is connected and implanted surgically, much like a heart pacemaker. The surgical procedure involves placing a compact generator in the lower anterior abdomen wall and connecting a wire to a strip of electrodes placed adjacent to the back part of the spinal cord. Modern spinal cord stimulators are programmable externally by computer for optimal pain relief, so further surgery is unnecessary once implanted.
Objections to this treatment for RSD generally focus of the implantation itself, pointing out that, for some RSD sufferers, any surgery is likely to aggravate the symptoms.
To see "A pain doctor's comments about Spinal Chord Stimulators" click here.
We have had more input on SCS than on any other treatment. Obviously, this is one that arouses trong feelings. Please look at both sides of the debate before forming an opinion.
To learn about the fitting process read the article "How is an SCS fitted?" in our FAQ section written by Karen, one of the RSD Alert Team.

Comments

I personally would never have a SCS implanted in the spine. My reasons are that it doesn't work for everyone, it is major surgery, you can end up paralysed. I have a SCS that looks like a TENS machine, and can be applied to the skin using electrode pads, but it isn't the same, though it works in the same way; the website address is:- www.apml.co.uk . It has made a positive difference to my pain. They are quite expensive, but I think it is worth trying rather than have major surgery and finding that it hasn't worked. Zoe - Sheffield, Yorkshire, UK

Initially this procedure sounds like HELL but you want real info, you'll get it!
The operation is the most awful thing I have ever had in my life. You have to be awake - you have local anaesthetic but the surgeon needs to know about your sensations when doing the implant. I still have nightmares about the operation and no doctor will give you accurate success/failure rates.
SCS does not relieve pain as such. It is similar to a TENS machine but more accurate in its location and has a different sensation. TENS was useless to me but SCS gives me more control, numbing sensations and masking the pain. It works for me. Others have different feelings with SCS. Upper body implants (including arms and hands) seem to be less affective than SCS for lower limb/back pain. I have the implant programmed for my hand and relief is pretty good. I cannot give a percentage of relief as the pain is always there, it only gets worse not better. Many people have been refused surgery as the surgeon does not feel that an implant would help… at least some doctors are honest!
I was unlucky. My first implant broke on Christmas Day 1998. As the device is located high in my spine, a certain neck movement tore the anchor from the ligament it was attached to and I had major pain and loads of coloured lights. I had it replaced in 1999 as the pain is easier to deal with when SCS is turned on. To prevent this breakage happening again, they fitted a 'safety loop' at my neck and changed the actual anchor from a hard 'resin' type to a soft silicone which was less likely to tear from the ligament. The 'safety loop' of spare cable allows slack if I have the same neck movement.
The excellent thing about SCS is that it does not affect your meds at all and you can leave the device on all day and night with complete control of the sensation. The downside is the problem of fixing the patch to the correct place. My pack is implanted in a cavity under my stomach and you have to place the patch accurately to get any feeling. You are given special adhesive pads but they do not work all the time and I always put sticking plaster over the patch (which helps immensely). A funny side-effect is that I can set off all sorts of alarms in shops. I don't get embarrassed by this any more and I have a list of people who want to shop with me just to see this happening!
I used to have a lovely figure; now wheelchair-bound I have put on weight and feel very ugly, though the scarring is no longer a problem to me. My initial implant left four lumps on my spine ( I felt like a lizard). The doctor tried hard not to let this happen when the second implant was put in but I still have these lumps. Backless tops and dresses were given away very quickly. My scar sites are very sensitive, which has been attributed to RSD. I can only sleep, sit, be in wheelchair or in a car if I use a V pillow, which I don't find much of a problem.
Any decision to have SCS must be an individual one. My husband was a complete wreck during the first stages and again when he realised that further surgery was needed. He suffers with me but he does not have the constant pain.
Despite all the trauma I would not be without SCS. Pebbles (a member of RSD UK Group)

I am a little saddened about the coverage about the SCS unit on these pages and want to share my experience...
I have had SCS for about 8 months and, apart from one issue I caused by not listening to the doctor, I have had great success with the unit. The issue I had was not letting the probes heal into place and just doing normal life things that I was not healed enough to do yet. So when my Doctor replaced the probes for both legs and lower in the lower back and let them heal to the fullest I have had no problems what so ever since. The SCS unit is implanted in my right side and it took some getting use to; but now I do not even know it is there. With the SCS unit I went from a pain scale 10 (the worst that worst can be) to a pain scale 2 (a very big change in my life) with one reprogram due to healing. Now I am lifting weights and getting my legs back to what I hope is normal and moving on with my life. All this may sound too perfect, but I also did lose my wife and 4 children due to RSD and went broke in the process. But now with a little positive thinking and knowing the fact that the RSD will never totally go away I am on my way back up. I have a management job at a hospital, a very caring and supportive girlfriend and a place to live in comfort. All because I did not give up and I tried everything I could to get better and used the system to get there. If you have a will there is a way - and I encourage everyone never to give up. To put things into perspective, I have had 24 surgical treatments (including the SCS implant), artificial hip, knee, tibia, fibula, femur and right leg; I spent 2 years in a wheel chair and 5 ½ months in hospital; I died 2 twice - once for 48 seconds and once for 1 ½ minutes; and I had 5 doctors just for my leg and 4 doctors for my RSD. It took 8 years to get to the point where I am now - almost pain free and walking; but I never gave up and I did most of it on my own. I hope this gives some people a little hope. David - Clearwater, Florida, USA

UPDATE from David- February 2002
I have an update for you… My SCS was working great until the probes moved again for the third time. I am going for surgery in about 3 weeks to have a new type of probes put in where they sew the probes to the area. The probes are on a flexible pad that gets sewn to the spinal area and then fed down the back to the stimulator. I had to have my SCS turned off so I did not waste the battery - so the PAIN is back and so is the sleeplessness and the pain killers and the swelling in my legs and back. So I know the SCS has been working and I can't wait until I have the SCS turned back on so I can enjoy the pain relief again.

I had a SCS implanted approximately 3 years ago. My RSD is mainly in my left leg, hip, trunk portion and has spread up my back and is now mimicking the same symptoms on the right. I had all that could be done (physical therapy, pain blocks etc.) and felt this was my last ray of hope. The surgeon gave no guarantee that it would work, but if it did, my pain should have been reduced 40-50%. I had to take a psychological test to be sure I could mentally and emotionally stand such a device being implanted inside of me; and also to prove to the insurance company, because of the expense, that I wouldn't turn around after the procedure and demand to have it removed. Apparently this has happened in the past, which is why this test was mandated. So I went into this with great anticipation and optimism - not a negative thought in my mind! The surgeon vowed it would not be any more painful than the RSD I was already living with, so I thought I covered all the ground thoroughly. I even talked to patients who had previously had this implant - some with more positive results than others. I knew everyone was different. I also found out that a technician not a doctor from Medtronic goes into the operating room with the surgeon and helps in setting up the main controls or vibrations that you feel from the implant.
Unfortunately for me, it didn't work. I had a terrible recovery - I have low blood pressure, which prevented them from giving me more pain medication for fear it could put me in a coma. The implant is placed inside your back and held together with some kind of clamps. To get the implant where it has to go they also remove a bone which they say we can live without. All the wiring for the volume and vibration control is kept outside of you until you make your final decision if it is working. The surgeon then asks you if you think it is helping - to be honest, you are in such pain I don't feel you honestly can make a rational decision. I figured I went this far, so let's continue.
Before I had this surgery, I could not lay on my left side at all. I specifically asked the surgeon to avoid my right side, so that I still would have a place to sleep (knowing I would not be able to lay on my back). He assured me there would be no problem but, need I say, the signal box was implanted on my right side. I had to put pillows under my left side to try and get comfortable because, with staples in my right side and back, I had no other choice. When I confronted the surgeon the next morning, he said - as far as pain goes if he told me the truth would I have had it done? As for the permanent box, he said - they couldn't put it on my RSD side so they had no choice.
I'm one of these people that want to go into something with my eyes opened, not being deceived. The only reason I am telling you this horrible story is so people go into this with their eyes wide open and ask their doctor questions before it is done. RSD pain is indescribable, but having your back and side opened up and your insides moved around is pain I wish never to have to experience again. You have to be aware that this procedure is not a walk in the park, so you are not expecting miracles right away.
You are given what looks like a TV remote control, so that you can control the speed and vibrations, you hold this up to the implanted box which intercepts the signals. After your staples are removed and you are feeling a whole lot better from the operations, you meet with your surgeon and he has a small computer that is somehow again linked to your implants. He tried to realign my signals twice and the Medtronic people tried three times - but they weren't even close to where my pain was. The placements must have moved off the spots somehow. I was told after two months that I should just turn it off for good. They did ask me if I wanted them to go back in and try to reposition them, but my nightmares were still fresh in my mind and I declined. Now years later, I find myself in quite a pickle. My previous RSD specialist wanted me to have it totally removed, feeling that these foreign objects were aggravating my RSD. I conferred with three separate neurosurgeons, who all agreed that the box on my side could come out, but 2 of them said that I should not have the electrodes removed from my spinal column for fear of paralysis. I did not ask the surgeon who did the implant, because he had lied to me.
The other negative thing about this implant is that you can never have an MRI test again. The major problem I have had since the surgery, is that I cannot lay down on my back or my right side where the box is implanted. I don't want to scare people off having this done but I urged everyone to ask their doctors questions before agreeing to the treatment. Christine - Pennsylvania, USA

I am 15 and have had CRPS/RSDS for over 3 years in my right leg. Having become a member of SKIP I was interested in seeing how various treatments have worked for other people. Last summer I was offered a SCS, with this being a last resort and something that my doctors had previously decided not to do. I was really horrified when I read the feedback about them. Everyone who's been offered one knows that it may or may not work, but it does seem that there is a very negative attitude about them. Having been offered one, and had the offer taken away, I woke up every day frustrated that there was a treatment there that I couldn't try, though I didn't know if it would work. I agree that it may not be a preferable treatment to have, as it is invasive and there are risks; but to me it seemed preferable to living indefinitely with chronic pain. If someone is uncertain about a treatment they can easily be dissuaded. I know my doctors were exceptionally reluctant to do it, especially on an adolescent, and as there is so little written record of them being tried on my age group, their attitude is hardly surprising.
I went to see another pain specialist a while ago and they said that they would refuse to do a SCS, as the results were inconclusive or not good enough. Last summer they decided that they would offer me one and, after a year of seeing my leg deteriorate to the point where I could do nothing with it - and being cold, purple and swollen all the time - I decided to give it a try.
All year I had struggled at school on crutches, taking painkillers and generally missing a lot of work, but at last this gave me some hope; if I hadn't had it I am sure I my leg would have got much worse. I do agree with those people who say that the trial, under local, is unpleasant, but I don't think you can really prepare for it. However, once they got it in the right place, my foot became free of pain for the first time in years. It was really amazing. Unfortunately when I turned over it moved, but I had seen what it could be like and my doctor tried it again a couple of days later. When this also moved, it was decided that I should have a permanent one which would have a much greater chance of staying in position. This was put in under general anaesthetic by a neurosurgeon. Once my back had recovered, the SCS worked brilliantly and, after not being able to do anything for ages, I was off my crutches and walking a few weeks later. I could sleep properly for the first time, and my pain was greatly reduced.
I then decided to go back to school, and started to do a lot of sport, including running and rowing. Slowly the pain in my leg returned and the SCS stopped stimulating my leg. As it had worked so well they decided to do it again (many people would ask why I decided to go through it, but I don't think I couldn't have done as I knew how much it had changed my life). The SCS then, again unfortunately twisted and had stopped working well by the time I was having my stitches out. Once again I was operated on - this time it was put into place with 'super' glue after removing a larger amount of bone; so it took a while longer to recover. But it has worked brilliantly and, once again, I am back to playing sport.
I hope this shows a more positive perspective on SCS, and encourages more people to consider it Lydia - a member of SKIP RSD-UK

I have lived with RSD for 3 LONG years. I have never been through such pain in my life. I also had a stimulator implanted. No I am not happy. At first they are happy to contact you to get your money. After the implant I have had nothing but trouble. Mine no longer works and they say it is my fault. A lead is loose. I recently fired the doctor that placed it inside my back. I have these huge knots in my back and he said it is scar tissue. Should this be from only a year of placement? Every now and then if I move a certain way I can still get a jitter. I am going to a new doctor in 2 weeks to start all over AGAIN. But you see I have lost all faith in doctors these days - in medicine and in any type of machine. Georgia - Kentucky, USA