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spinal cord stimulator

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hi...i'm a rather new person here but want to share info on my attempt to receive pain relief from scs. i have had 40 yrs of leg, back, and neck/arm pain. ive had 7 surgeries. i have ddd, stenosis, ligementum flavum, and facet hypertrophy. my condition was agravated by an endocrine disease that caused my bones to grow excessively, especially in my ribs, neck and spine. bones have literally rapped around nerves.
my last hope is the spinal cord stimulator. my pm dr tried to insert a trial lead into position to test how i would react. unfortunately too much bony growth prevented dr from getting the lead in next to spinal cord.
since my pain appeared to be such that the scs would work a plan was developed to drill away part of my lamina and insert the scs paddle.[ANS]
after 3 hour procedure the scs was inserted. i was sent home 2 days after surgery and had no incision pain either for the paddle or battery incisions. my muscles were extremely sore from lying on my stomach for 3 hours.
unfortunately my pain has not been reduced. i have been back for reprogramming but to no avail. i saw my neurosurgeon yesterday and he feels confident the right stimulation can be achieved. the pm dr said if it takes 100 reprogramming he will try to help me. right now the stimulator is on low and does not seem to stimulate my legs. i will try to keep you all posted just so someone might be helped by my info.....pete
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First Helper pete81241
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replied November 27th, 2009
Extremely eHealthy
was reprogrammed again and still no pain relief.
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replied March 18th, 2012
Hi I have had my stimulator 2 weeks and it was working very well and I woke up this morning and the paddle has moved so I go to the DR tomorrow keep your head up and keep the faith.
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replied November 28th, 2009
Extremely eHealthy
Pete,

Do you think that you should see another doctor for a second opinion on why there is no pain relief and the problems inserting the SCS?

Have they called in one of the manufacturer reps to see if they can be of any assistance?

Could it be that they just didn't place it at the right level and location?

How many times have they tried to adjust it for you?

Fran
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replied November 28th, 2009
Extremely eHealthy
good morning Fran....
thanks for responding to my post. i was beginning to think nobody cared about my situation. at least you are supportive! ...when youre in constant pain the support helps.
this stimulator insertion has been my last hope for getting relief from my leg pain. i cant tell you how bad it is. i actually spent thanksgiving dinner on the floor while other people ate their food at the table. the floor is my friend. i sleep there every night. my back is very sensitive to the slightest bend.
anyway i did request a new rep because the first one didnt seem responsible....the second rep was much better. he got the stimulation everywhere in my legs. i want to give this second rep a chance to do more programming on the unit.
the pain management dr i see at a major hospital in boston is in charge of my case. i also had an excellent neurosurgeon actually perform the insertion surgery. both drs dont really touch the stimulator. you are at the mercy of the programmer.
the neurosurgeon ordered xrays to see if the unit had moved from its position. it hadnt and the unit which is about the size of a paperclip was in perfect position to provide stimulation in the legs. they call the actual stimulator a paddle. it has 28 different small electrical terminals that can be controlled by the programmer. so that gives him millions of combinations he can use.
my pm dr is very determined to help my pain and he stated he would have it programmed 100 times if necessary. so i will let them work on it until they give up. i like their attitude. maybe one of the settings will do the trick.
this last adjustment was the third try. i was joking with doc and said he had 97 more to go.
the original plan was to have me start physical therapy after the pain was controlled. i decided to start the therapy anyway. i find that i can do the exercises even though it hurts. i get no exercise so the exercise does make me tired and i find i sleep better at night.
have a great day....pete
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replied May 18th, 2011
Friend, you can't assume no one cares if you don't get a response. The only people who can really understand what you are going through are people who, like yourself, have had all the issues with pain...physical and emotional. I get very discouraged regarding my own fate when I read your history and see your pain.
After 6 years of 'narcotic therapy' and having my case referred to as a success-because I was able to work and resume some semblence of life, albeit in an opioid stupor-I have just had a SCS implanted at C5-C6 to combat chronic thoracic pain from a T5 burst fracture. This was surgery 6. Numbers 1 and 2 were for hardware insertin and fusion then removal, 3 was for a kyphoplasty to elevate the angle at T5(so I looked less like a litlle old man) and 4-6 have been to test and install the scs units/leads.
I am not completely satisfied with the effects of this scs as of yet, as I am getting shocked from my heels to my ears, but I am very hopeful to be able to get even a smidgeon of relief from constant pain.
I am so sorry for your pain, and wish you the best my friend. I completely understand how you are feeling, as very few of us can! Hang in there. Many of us read your posts, and like you have no idea what to do or where to turn. I think I speak for many when I say that we are all with you. I pray for your health and return to some normalcy in life, and hopefully a life that is at least pain-reduced.
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replied November 28th, 2009
Extremely eHealthy
Hi Pete,

Don't think that no one cared. I should have clicked on your thread, but I didn't notice it was you that started it until I saw you posted to it and took a look.

I didn't originally respond because I don't really know much in specifics on SCS and so didn't think I could offer any real imput.

So we are fellow spineys in the same state.

I live about 25 miles northwest of boston. I did get a couple of opinions on my spine before my first surgery in Boston, but was far from impressed with the docs I saw and as a matter of fact all 3 of them gave me the wrong diagnosis and wanted to do the wrong surgery.

That doesn't mean that the ones you are using are bad though, only that I didn't fare well with the ones I saw.

So glad you got another rep, sometimes that is what it takes, one has more experience than another, especially with more difficult cases.

Telling you to be patient and keep the hope is not great advise, even if it's true. Least of all when you are doubled over in pain as you are.
And nerve pain has to be the worst pain in the world. There is nothing worse. NO, it take that back; somehow I can deal with the spine pain, when I had it, but now my mouth, forget it. I can't deal with any kind of dental pain. that is worse.

So sorry thanksgiving was spent on the floor, that's not good.

Personally, I don't think you are wrong to start the PT now, before all the pain is gone.

The spine is a real problem area and it causes and radiates pain all over the place, wreaks havoc everywhere in the body and weakens muscles very, very quickly.

That old kids song about everything is hitched to another part of the body is so true.

If your cores are weak, which I will assume they are because of the spine pain that prevents you from moving correctly and moving much at all, then I'd bet that a lot of your pain is from those weak muscles being used wrong.

With or without the SCS, you have to strengthen those cores to help with stability and movement, and I don't think that an SCS will ease all of the muscle pain that you probably have going on.

By slowly starting to strengthen those muscles as the SCS gets adjusted and working, you will be ahead of the game and maybe decrease some of the pain before even that pesky SCS gets working.

Hey, that pain doc may not have to use all of his 97 attempts left if the PT starts to help.

Just take that PT real slow.

Be sure to have them use moist heat on your muscles before you start PT and ice to cool them down afterwards.

Have you given moist heat a try to help ease any of the pain? You might want to try that.

Oh, yeah, don't play macho man on us here and do those exercises till you are doubling in pain. Do them slow and easy and don't go gun ho on them. That isn't going to help either. Slow and steady, a little bit at a time.

Remember you didn't get into this mess with your spine, nor did I, overnight, it took the body a long time to get into this mess, so fixing it up isn't going to be done over night and neither is getting those cores going again and strong.

Keep the faith and patience, patience patience. Don't overdo, whatever that really means, I haven't figured it out yet either.

Fran
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replied November 29th, 2009
Extremely eHealthy
hi Fran...
well we are neighbors. i live fifteen miles south west of boston. small world isnt it...
thanks for tip on using warm, moist heat. i'll talk to pt about it monday on my next appointment. they seem to think my muscles are fairly strong even though i cant stand up for more than 60 seconds. i spend a lot of time on the floor and when i am in that position i keep doing basic stretches just to move as much as i can. my dr commented just the other day that my stomach muscles were like steel..lol. but when the pain is bad even strong muscles dont allow you to keep moving. pain is such a strange thing. my left leg is much stronger than my right leg but the pain is worse in that strong left leg. one dr explained it to me. he said the spinal cord is made up of different kinds of nerves. pain nerves, muscle control nerves, and also nerves to sense heat and cold. so if the pain nerves are pressured your leg can still be strong but if the muscle control nerves are pinched the leg gets weak and may atrophy. i get pins and needles all through both legs almost all the time. if i sit or stand the pins and needles are made worse by terrible aching pain. when that hits i have no choice but to lay on floor and wait for pressure to ease.
as for spinal cord stimulator my neurosurgeon explained that the stimulator will interfere with pain signals traveling through the spinal cord to the brain. apparently the brain will not recognize the altered signals and the pain that you previously felt will be gone.
he went on to say that if a person has pain long enough the brain LEARNS to feel that pain all the time even if there is no longer pain in the limb. an example of this is phantom pain that is felt by amputees. in that situation the pain doesnt travel up from the limbs via the normal pathways to the brain. the brain has just learned to feel pain forever and the pathways are self contained only in the brain. according to the dr this type of condition can actually be helped by implanting a stimulator in the brain itself according to this neurosurgeon. he said where ive had pain so long...40 years...my pain may be following pathways in the brain just like the amputee. interesting stuff isnt it...who knows maybe they will put stimulator in my brain...it could use a little stimulation lol.
well fran thats enough theory for 3am in the morning. think i'l try to rest this crazy brain and get some sleep. thanks for feedback and hope the dental pain problems ease. did dr give you neurontin?
take care...pete
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replied December 22nd, 2012
Pete,

Thanks for this post. I have had my back pain for the majority of fifteen years, and I am studying bio/chem to hopefully go to med school. If my back ever gets better it will help a lot towards that end. I have spent a lot of time learning about my pain, but your doctors explanation of the phantom pain is something I had never heard or read. It makes total sense though, and I really like to learn new things that might allow me to understand my pain so thanks for posting that.

I am curious about any of you who might read this post to see what medications you are on, and how your relationship is with your PM docs. I had been with the same doctor for about five years, and for the most part he had been an OK doc, but about a year ago he became really nasty to me and said many things that frankly could get him in serious trouble. After being abused by him for several months I decided to find another doc, but in our last meeting he told me that since I felt our relationship had deteriorated that I should see another doc. He managed to get the name from me, which was a huge mistake on my part, and he said that he was going to refer me. Instead I believe that he called the new doc and made me out to be a bad patient and a drug seeker. In my very first meeting with the new doctor he was immediately rude, and has been cold as hell to me. I have never had doctors with such terrible bedside manner in my life. I like most of you have spent a lot of time with doctors, and most of them have become friends, but for some reason I have hit a wall with the PM guys here in NV. I am thinking of going to San Fran, or somewhere larger to work with new people. I just wanted to know what kind of luck you all have had with your PM doctors, and if you have ever had issues like I am having now.

Thanks for your posts all of you. Even though some of my friends and family have had minor pain issues none of them have had to deal with the level of pain that we feel all day every day, and I think that pain is a little like love. If you have never really had it then you can't understand what it feels like.
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replied September 16th, 2010
Spinal cord stimulator England Parmjit
Hi I have had a scs put in in Jan 2010 ,I have had my l2 disc removed but had alot of pain in the lower back and legs and feet.I was told to try the scs which i did but found that i still get pain.The scs had help reduce some of the pain but not all.I have it on 24/7 buthave to charge up every other day.I have notices that it works for some and not for others.The main thing is I can go and have a slow walk ,but while walking I have to stop because the scs kicks in and the tingle you get from it slows you down when walking.
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replied September 16th, 2010
Extremely eHealthy
i'm surprised it only lasts only two days. who is the manufacturer?
my st jude model would run a month!
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replied May 25th, 2011
spinal cord stemulator
i am 8 weeks out from having the st jude eon mini. i have got some releive in my low back right hip and leg, but i have been programed 3 times already because it stops helping. my paddle was sowed to my spinal cord. they tell me that they will be able to get it programed better after it completly scares in. i just started pt ,but it is for my upper back where they removed the bone from my spine to put in the paddle. the surgeon said he had to remove alot more bone than he wanted to. i thought it was just muscle pain from where theycut into my back, but the pt said it is rib pain not muscle. i reqire a high frecrency to control my pain and that uses more battery , so i have to recharge every other day. i am very hopeful that after i am completely healed they will be able to get me programed in good and therefore be able to cut back on the meds i take and get more active. when working properly i get about 50 to 60 % reduction in pain. if i can have that all the time i think the implant will be well worth it. has anyone else had problems with the bad rib pain?
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replied March 9th, 2012
Hoping to find answers
Hello everyone I don't know if people are still adding to this section of the site, but I wanted to talk a bit about the stimulator. My PM doc is pushing to get me to have one put in, and says that the St. Jude model is the only one that works and that he has pulled several other models out and replaced them with St. Jude ones. He swears that even though most of the reading I have done has shown that it is hit or miss at best with these things I really don't have much of a choice. He said that the pump has something like a 25 percent fatality rate in the first year due to them putting the medication in the wrong place and causing overdose. I have not heard him talk about the ablation, and maybe I am not a candidate because of my particular problems. I would like all those who have not seen this info to know that Ketamine is now looking like a possible treatment to reduce opiates for patients with pain like ours. It has no chemical addiction so there is no withdrawal symptoms if you stop. There can be a psychological addiction, but it seems even though it is an old drug that they don't know a lot about what it can do outside of a hospital setting where it is used as an anesthetic. It was also just released from several of the best hospitals on the east coast including Harvard that Ketamine may be the biggest thing to happen in Psychiatric medicine in over a half century. There are cases of people who have been suicidal one day, and after just one dose they were out living life almost as if they did not have depression at all. I am guessing that most of you are like me and have had or have depression due to pain. Mine has been terrible for about a 1 1/2 years now. I have been on and off pain meds for over fifteen years, and have detoxed completely at least 7 times now. I really don't know what to do. Should I go with the stimulator and risk the problems and of course the expense or should I see if this ketamine treatment becomes available to a wider group of people. I have looked at drug trials and they only want one or the other of either pain or depression, but not both. Which I don't understand since this could be a miracle drug for many of us. I would like to hear what you guys have to say about it, and also I am trying to see if I can organize a national group of people in our situation to advocate for us to the medical community. I don't know about you but I have had several PM docs over the years, and even the one I have now that has been pretty good to me for the most part he can not understand what we go through. It is so frustrating to talk to a Dr. who thinks he has all the answers, but has never had to feel the way we do. And now with all the crap going on with the pill farms in Florida, the DEA is making it harder on the Doctors which in turn makes it harder on us. I know that there are a ton of us out in the U.S. and we need to get together as a group and use that power to make changes to the system. I am afraid that if that does not happen soon that getting meds will become almost impossible because doctors won't want to take the risk, and also they will be cutting people back who need those meds just so the DEA won't hassle them. With things like ketamine being over 50 years on the market yet still almost nothing is known about the long term affects or benefits for depression and pain management as a whole. Together a group could lobby to make sure that we are not treated like street heroin addicts and get the relief, respect, and support in moving drug trials faster so that we might be able to live life as normal as possible. Anyway I do hope to hear from those of you on this site, and to work on getting people from all over to join a movement to make people understand that our pain is serious and that we deserve the same support as any other major disease gets, and as important that the stigma that we all live with is lifted. Thanks to all who read this and I wish all of you good luck in getting relief.
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replied December 18th, 2012
spinal stimulator questions
Hello all I just had a L4 L5 microdiscectomy in the beginning of November to help me from not falling anymore. A MVA mangled me up pretty good and I would fall on the ground every day and I decided to get surgery b/c I was falling multiple times a day. Sad I am 29 years old and live like I am 80. Sadly I had major complications after the surgery! I was also told before I went the surgery (at my surgical consult) I would have no relief from my severe low back pain. I have tried all different types of narcotic therapy and nothing helps strong mild nothing. My low back pain is excruciating. I have been to a few Dr.'s and all of them say the same thing a L4-S1 fusion would help but no one will do it b/c I am so young and it leads to more surgeries over my life and a lifetime of Disability they all say I will never work again. All of the Dr's say they don't want to do that to someone as young as me unless they absolutely HAVE to after all other options are ehausted. I still have hip pain but I don't have any more leg pain and I don't fall anymore so my family doesn't have to worry about me living alone anymore. I have to still use a shower chair and can not cook for myself nor can I do many major things I need to do as a 29 yr old woman. I was told to check w/my PM Dr. to see about a spinal stimulator but I have narrowing of disc spaces and osteophytes etc in my lower back and am so scared to do anything else that may not help. I am so depressed that I can't live a normal life and no one wants to date me b/c of my health issues I fear I will be single forever!! I am so lost. I am scared that if I get a stimulator now that I will later in life have no treatments left and I also fear that if I have the stimulator I will still have to be on narcotics due to the fact it won't fully help w/my pain. I don't sleep for more than an hour or 2 at a time w/out waking up in pain. I am soooo lost HELPPP what is your opinion on a spinal stimulator on someone as young as I am w/the possibility of it not working forever and also needing help via narcotic therapy along with the stimulator b/c it may not take the pain all away. Just to let you know how bad the pain is and the med regimen that isn't working at the moment, this is my post op meds: Percocet 10/325mg every 6 hours, Oxycodone ER 20mg every 8 hrs...for sleeping I found very mild relief in a Butrans patch but I am awaiting to see the Dr. again to talk to him about getting that put back in my medication regimen along w/the above. The horrible pain team at the hospital made me take it off when I was admitted back into the hospital and I was stuck in the hospital for a lot longer than I should have been due to them being inept and having no idea what that patch really was for(I had to have one of the nurses print out the pamphlet that you get from the pharmacy for them it was horrible)! Finally they removed them from my case and called my PM Dr. for a pain consult and I was home 2 days later!!! I had complications after surgery that landed me back in the hospital which was a horrible experience and I don't want to have that happen again that's another reason I'm scarred to do the spinal stimulator!!!
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replied December 22nd, 2012
I understand what you are going through. I am 37, but I had my first surgery when I was about 25, and I am scared like you that my last real hope is with the stimulator. Worst is that if it doesn't work then I might be stuck on pain meds for the rest of my life. It's a horrible feeling to think that there might be no other options available to you. I can assure you that there are men out there that want to date you. Even though I have not been dating recently, I have been able to date even with my pain.
I am sorry that you are in such pain, and that you are forced to face these things. But, I can tell you that you are not on a large amount of medication compared to a lot of people. I am surprised that with all of the pain and issues with sleep that you have that your PM doctor has not increased your medication. I am on 20mg of oxycodone for break through 3X per day, and 60mg of Morphine 3X per day. If you are experiencing that much pain all the time you should have had your medications adjusted by now. Where do you live? Are you near any major hospitals? I am looking at this point for a pain management group that is all inclusive, and that does not exist in my town so I will have to go to a major city near me to find it. I hope that they help you soon, because I know that they hate giving more meds, and that some doctors are more conservative than others but it is clear that you are under medicated for your level of pain, and since your body is becoming adjusted to the medication it will become harder and harder to get pain relief from opiates. Hyper-analgesia happens to everyone that is on pain meds for a long enough time, but until we find something else that helps there is not much choice. That is why I am likely to try the stimulator, because what is the alternative? Good luck and keep your head up things will get better.
P.S. I have had L4-S1 fused in two separate surgery's, and even though I have a lot of pain, I do believe that I will find something to help so that I can finish school and go back to work.
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replied March 9th, 2012
Hoping to find answers
Hello everyone I don't know if people are still adding to this section of the site, but I wanted to talk a bit about the stimulator. My PM doc is pushing to get me to have one put in, and says that the St. Jude model is the only one that works and that he has pulled several other models out and replaced them with St. Jude ones. He swears that even though most of the reading I have done has shown that it is hit or miss at best with these things I really don't have much of a choice. He said that the pump has something like a 25 percent fatality rate in the first year due to them putting the medication in the wrong place and causing overdose. I have not heard him talk about the ablation, and maybe I am not a candidate because of my particular problems. I would like all those who have not seen this info to know that Ketamine is now looking like a possible treatment to reduce opiates for patients with pain like ours. It has no chemical addiction so there is no withdrawal symptoms if you stop. There can be a psychological addiction, but it seems even though it is an old drug that they don't know a lot about what it can do outside of a hospital setting where it is used as an anesthetic. It was also just released from several of the best hospitals on the east coast including Harvard that Ketamine may be the biggest thing to happen in Psychiatric medicine in over a half century. There are cases of people who have been suicidal one day, and after just one dose they were out living life almost as if they did not have depression at all. I am guessing that most of you are like me and have had or have depression due to pain. Mine has been terrible for about a 1 1/2 years now. I have been on and off pain meds for over fifteen years, and have detoxed completely at least 7 times now. I really don't know what to do. Should I go with the stimulator and risk the problems and of course the expense or should I see if this ketamine treatment becomes available to a wider group of people. I have looked at drug trials and they only want one or the other of either pain or depression, but not both. Which I don't understand since this could be a miracle drug for many of us. I would like to hear what you guys have to say about it, and also I am trying to see if I can organize a national group of people in our situation to advocate for us to the medical community. I don't know about you but I have had several PM docs over the years, and even the one I have now that has been pretty good to me for the most part he can not understand what we go through. It is so frustrating to talk to a Dr. who thinks he has all the answers, but has never had to feel the way we do. And now with all the crap going on with the pill farms in Florida, the DEA is making it harder on the Doctors which in turn makes it harder on us. I know that there are a ton of us out in the U.S. and we need to get together as a group and use that power to make changes to the system. I am afraid that if that does not happen soon that getting meds will become almost impossible because doctors won't want to take the risk, and also they will be cutting people back who need those meds just so the DEA won't hassle them. With things like ketamine being over 50 years on the market yet still almost nothing is known about the long term affects or benefits for depression and pain management as a whole. Together a group could lobby to make sure that we are not treated like street heroin addicts and get the relief, respect, and support in moving drug trials faster so that we might be able to live life as normal as possible. Anyway I do hope to hear from those of you on this site, and to work on getting people from all over to join a movement to make people understand that our pain is serious and that we deserve the same support as any other major disease gets, and as important that the stigma that we all live with is lifted. Thanks to all who read this and I wish all of you good luck in getting relief.
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