SCS Therapy (Spinal Cord Stimulation)

I had the stimulator implanted in August 2009 and I will swear on it for cutting the pain by more than 50%.  I use mine when ever I have pain.  I have recommended it to three of my friends and they all have had it done and they are so happy.  You will love the results.  Good luck with it.  c4q2compute in Ca.

I tried the scs therapy.  They first place a trial device in to see if it will work for you.  It stays in for about a week and you report to your dr regarding your levels of pain.  At the end of the week, you report back to your dr and if it worked good, they put the permanent scs in you.

It didn't work well for me.  I was able to get very little pain relief and in fact, at times I felt it was causing an increase in my pain.  About the 50%, if you get that much relief with the scs, you're very lucky.  The dr's look at it like this:  if you have at least 30% relief.  In July 2006 I had an intrathecal pump implanted and through a lot of trial and error, I've finally got good relief.  My meds in my pump had to be adjusted a lot before they finally got it right.

With the different therapies everyone has a different experience.  Please, please do lots of research before you decide.  Good luck to you.

Yes, I have had this implanted into my body.  For a small window of time, it helped relieve about 30% of the pain.  However,  I don't use it anymore and will have to have surgery to remove the battery.  They cannot take the little nodes on my spine out without performing very risky surgery that might cause infection or more spinal inflammation.  They will do a trial before they implant the system, so maybe you could experiment with it that way.  If I had it to do over, I wouldn't have it done, but I do know of some people who have responded very well to this therapy.

While I have not personally tried spinal chord stimulation, I have discussed it many times with my pain management specialist as well as an implanted opioid pump which he recommends both.  He did tell me first thing that spinal chord stimulation doe have risks involved and gave me lots of good information to read all about it which I did.  It actually scared me to the point that I said "never" to both spinal chord stimulation and to an opioid internal pump, both seemed quite invasive to me with no guarantee of positive results and then the possible risks involved with spinal chord stimulation.

I have lived with intractable (chronic) pain for almost 3 years now and some days I think, "why not try them" but so far I haven't but I will not say I never will.  I guess it depends on how tired I get of living with chronic pain and that will be the deciding factor or if it gets worse.

My pain is treated with fairly good success with both morphine sulfate continuous and with morphine sulfate immediate.  I chose MS because it is so tried and true and has been used for so many years with good success unlike some of the newer opioids.  Of course, I have to take Lactulose and Peri-colace to keep from getting severe constipation which happens with any opioid.  I also take lorazepam and clonazepam and both of those are very good with anxiety and sleep.

My suggestions are simple, do your research carefully and talk to others that have used these methods of treating chronic pain and have a very good pain managment specialist.  I think then you can make an infomed decision of what would be best for your particular situation, everyone with chronic pain is different.

Good luck to you and I hope it all works out for you and you find relief from your chronic pain, it sure isn't any fun.

Wishing everyone a pain free night or at least less pain, though I know these words are pretty empty but I do wish this for all in pain.

Randy.

I had my ANS SCS placed last Sept.2008.  There are times that I have felt it has reduced my pain by up to 50% . I have peripheral neuropathy all over my body including head and face but I had the stimulator implanted for the burning and pain in my legs and feet. I also have fibromyalgia and rheumatoid arthritis but didn't get the SCS for those reasons.  I have been somewhat discouraged over the past 9 months because I had hoped for more pain relief more of the time.  Somedays it works well and other days it actually seems to make the pain worse. It seems like because it's nerve pain that somedays the stimulator irritates the nerves and makes it much worse so I will shut it off and see if in fact it was the stimulator that aggravated it.  After the first 3 months it was easier to figure out when to use it and when not. In the beginning I was keeping it on 24 hrs. around the clock which meant that every night I would go to bed with the recharger. Now because I'm not using all the time I don't need to recharge quite so often. I would never tell someone not to do it because it has helped me even though I wish it worked better and all of the time.  I also know alot of people who have had really good success with it. Everyone needs to make their own decision. You know what you're living with every day . Just be grateful for whatever relief you get. Denise from NH

It is not new therapy I have had one for about 10 years.  it will reduce med intake & p ain in the average person by about 50%.  Get a good neurosurgeon don't let a pain doctor or GP put the unit in for you.  You want 2 8 electrode paddle leads with the ultra restore rechargable unit.  I have tried all 3 types and this is by far the best.  It is the hardest surgery but it out weights everything. I have tried ANS & medtronic and medtronic is the best unit.

Tammy

I tried the trial one for Neuropathy. But the problem was.. I have the most pain on the bottom of my feet.. especially the balls of my feet. And it wouldn't "reach" down that far!  I have heard it works best for people with back problems. Or problems that are closer to the back where they put the implant. I DO not know IF this is correct or not. I just know it didn't work at all for me.  SO I live on pain meds.. that don't even take away 50% of my pain.  They said the pump would be the very very last resort for me. So they don't want to do it now. I am 53.. have lived in this cronic pain for 6 years now. I feel for ALL of us living in this pain. Its NO way to live.. but if you can get relief from this.. then you are very lucky!  Do lots of research and I soo wish you well!

I have two spinal cord implants.  The first was inserted Oct 08 in the T7 areafor leg and back pain.  It worked and have had 80% pain relief.  In Mar 09 I had the second inserted in the C1-C2 area for bilateral arm pain, neck pain, and headaches.  This one has decreased the pain by 90%.  When I say that the pain has been decreased it is with the pain medication also.  I have been able to decrease the amount of pain medications that I take.  I use tramadol three times a day, but I do not take ambien anymore for sleep and have been able to decrease the methadone to once or twice a week.  Before the stimulators I was taking methadone three times a day.  You will have good days and bad days.  The physical activity that you do, the better chance the pain will increase.  For me most times I just crank up the stimulators.  The only real problem that I have is using them while I sleep, getting the settings right.  A note of caution:  There are two types out there, one is better than the other.  I have a tech representative that I can call for assistance to reset the stimulators or fine tune them.  Make sure that you have this ability.  It does not cost any thing extra.  I am not sure that I am allowed to tell you what the product that I have.  Good luck.

hi sally!

yes, i had a scs (spinal cord stimulator) implanted in me in 2005 to help with my chronic back & leg pain. it was a scs from the company ANS, and it was a complete disaster. here's what happened.

before having the actual device implanted, i first had a scs trial for a weekend, where the scs was external and was carried around my waist in a fanny-pack type carrier, and the leads were the only parts of the scs that were internal (placed on my spine). this trial run actually worked pretty well...it replaced my pain with a buzzing/tingling type sensation which takes some getting used to, but when u have chronic severe pain, any type and amount of relief is welcome.  so, i decided to have the scs permanently implanted in me as i was satisfied with the pain relief from the trial (about 50%).

when i woke up from the scs implantation surgery, my nightmare began. i started to get uncontrollable cycles of fevers and chills, hot and cold, sweating and freezing constantly. then, all my joints (hands, arms, shoulders, feet, knees, etc,) were swollen, inflamed, stiff and sore. i could barely make a fist or hold a pencil. the swelling got so bad that it was cutting off circulation to my hands, arms and feet, and now those areas were going numb!! i had extreme weakness in my joints as well and had bouts of extreme fatigue....i mean EXTREME!!  sleeping 20hours a day for weeks on end, feeling so weak and tired that just getting up to go to the bathroom is a horribly depleting task. to top it all off, the actual scs device was not working properly...it was not covering the area in my lower back where i have most of my pain. instead it was stimulating my chest area, my ribs, the sides of my thighs, my middle back, my butt.....but not the lower back like it did during the trial. the docs verified that the leads were in the correct place, and they tried for about 9 months, with weekly visits to try to manipulate and program the scs to stimulate the right location in my lower back. the ans rep and docs kept saying that it takes time, that maybe the swelling from surgery or some scar tissue is affecting the scs. give it time they said...they kept trying for 9 months and nothing worked like it did during the trial, and they didn't know why.  so not only was i not getting any pain relief from the scs, but the scs started all these horrible side effects in me which i never ever had before (chronic chills/fevers, joint pain, joint weakness, joint swelling, extreme chronic fatigue, numbness, etc).  so i decided to have the scs removed hoping that it would put an end to all these new and debilitating side effects.  it's now been 3yrs since i had the scs removed from my body, and i still have all these horrible side effects. the docs think that the scs started some kind of inflammatory response in my body but they dont know why. so now because of going thru with the scs, i have arthritis throughout my entire body, fibromyalgia, chronic fatigue syndrome, extremity numbness, painful joints, and chronic chills/fevers.  there's no treatment so far that i've tried that has decreased or stopped these side effects. i am far worse now then before i had the scs treatment. i regretever having the scs done and i am not afraid to share this with others as you all have a right to know what can happen.

i later found out that my symptoms are not unusual, and many others with scs have the same problems as well as other side effects like chronic migraines. what's even worse, is that the ANS company that sells and pushes the scs device knew about these potential problems the entire time, and never disclosed them to me...instead they had the audacity to say that i was the only one like this and they never had any problems before. they lied to me, kept these side effects hidden from me, and refused to acknowledge their responsibility in this situation. in fact, ans was forcing many healthcare profesionals such as nurses and physician assistants to stay quiet about these side effects or else.  one nurse could no longer keep quiet as what ans was doing was morally and ethically wrong to patients. innocent patients who are already in pain were getting hurt and ending up in worse situations than they first began. so this nurse spoke up, and disclosed to her scs patients all the side effects known. that nurse, who stood up for patient rights, was fired after 15 yrs of exceptional service!!!  this cover-up from ans is very widespread (from nurses to doctors, to company reps and regional managers, all the way up the ladder.)  this is a very dangerous situation as all ANS sabout is making money and not patient wellfare and health. and these pain management centers are also in the business of making money.  so beware as you have been forewarned!! 

anyway, it is my experience to stay far far away from spinal cord stimulators from ANS altogether.  i have heard that medtronics is a company who also has scs but i am not sure of their track record.

hope this helps u out sally, as i wish someone would have told me before i went thru with it.  good luck to you!!!

I had the scs trial where they put the leads in for one week and test to see if it will work.  After the week was up, the leads were taken out and it was decided I would get the intrathecal pump instead.  The thing to remember is that it's not made for everyone.  I did talk to someone at Medtronics (the makers of scs) and was told that if you get 40% relief, consider it to be a success.  I would research it thoroughly and if you still feel good about it, go for it!  Just make sure you go into this without super high expectations.  Good luck to you.

HI , I too suffer from all that you mentioned. Please tell me more about SCS. Downunder

I,don"t think has heard of it yet.Aussisam

Hi thought i would give you a little of my imput on the scs implant. I had mine done in 05 at first i thought it was going to work great but i was wrong i didn`t get relief from it at all. Now my problem is that it sticks out of my right side its hard to lay on i bump it against things. I have ask the surgeon that put it in to please remove it and he refuses to do so,he told me just to turn it off and live with it more or less. I have contacted medtronics about helping me get it removed they gave me some doctors names but i have had no luck they don`t want to take it out if another doc put it in.I`m still trying to get it out no luck yet. I know everyone is different and what works for one may not work for another, all i am saying is really research this and make sure you can trust your doctor to remove if you get no relief, as thats one thing i asked before i had it put in my pain doctor said it would be no problem to remove but the surgeon feels different. i hope you the best on what ever you decide.  deb,il

I had the ANS/St. Jude Eon Mini implanted 9 months ago and it has dramatically changed my life. I had 3 surgeries in lower lumbar and was left with permanent S1 nerve damage.  The SCS is amazing for my pain.  I have lost 25 lbs since implantation due to the activity I can now tolerate.  The buzzing/massaging is like my best friend.   I wish everyone was a candidate for this therapy, but I know that can't be.

One huge piece of advice I have, though:  Do NOT leave the table of the SCS trial OR permanent placement unless and until you are buzzing in your pain area.  It can happen if the doctor has difficulty placing the leads, that they will want to stop and let the rep "work their magic".  This isn't good.  There's only so much "magic".  My leads (percutaneous, 2 of them ) are placed at L1-L2, much lower than normal.  I'm reading experiences on here of folks who did not have good results and their leads are up at T-7 to T-9.  I just wonder if those leads were lower, like mine, if they would have had my excellent result.  I buzz from my hips to my toes and it is simply amazing.

In my trial, I was buzzing in the front of my body when the doc was ready to stop.  I was NOT.  Long story I won't go in to, but by the next morning, miracle of all miracles my lead had dropped 1 inch (normally a disaster).  But for me, it was perfect, and the rep was able to reprogram me to perfection.

I think what my story shows is that not all of us are "wired" the same, and just because one doctor likes to put the leads at T-9 doesn't mean your body wouldn't do better lower.  This is why it is SO important to be woken up enough to say where you feel buzzing before they close you up.

I also HIGHLY recommend if you have had previous surgeries or any kind of scar tissue "issues", make sure you use a neurosurgeon and not a pain management doc for implant.  You will likely be a difficult case and you want someone specially trained to work around nerves.

Good luck to all considering it.

My husband had an ANS SCS implanted 6 years ago.  The trial went great.  The first SCS lasted 2 weeks and stopped working.  The Dr. blamed ANS, ANS blamed the doctor.  Back to surgery.  New ANS device placed.  Another 6 weeks off work.   This was okay for about 1 year.  While working one day he felt a "pop" and then pain.  Leads had popped out of the scar tissue.  Another surgery to repair.  Things were better...not great.  Next year...antoher surgery to revise.  Husband had lost weight and leads were now too close to the surface so when he would lean back in the car his whole body would go numb.  Yet another revision (are you sensing a theme?).  Now my husband wants the SCS removed...too much trouble.  Causes back pain (he had it implated for intercostal nerve pain s/p thoracotomy).  No one will remove the scs.  The original doctor isn't using ANS equipment anymore. None of the local hospitals will allow Dr.'s to operate on a patient with an ANS brand SCS.  Called and left message for the ANS rep to see who is affiliated with ANS.  I think the technology is good and sound.  do your research on brands of SCS.  Ask how you will have it removed if you don't want it anymore!