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Spinal Cord Stimulator SCS- Any testimonies?

Started by babydollbeck on 08/30/2011 9:46am

I have failed back syndrome after 3 surgeries: laminectomy & microdiskectomy, spinal fusion & facet fusion - all at L4-L5. I have DDD, hypermobile joints & chronic pain. This has been ongoing for about 4 years now. A recent MRI showed nothing new. My pain mgmt. doc (whom I trust) has recommended the SCS from Boston Scientific. I have the mandatory psych evaluation this week. If Blue Cross (ugh!) approves the procedure I could be having the trial within a month. I have some reservations but I don't feel I have another choice, save narcotics & misery. We have 2 children & I can't be the wife & mother I should be unless something changes drastically. I have read all the literature on Boston Scientific's website but I would prefer to hear from real people. Please comment if you have personal experience with a Spinal Cord Stimulator or if you know someone who does. Positive or negative, I want to hear about it. Thanks in advance!

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Hi babydollbeck, just read ur story,,,my name is Rene my story is posted, i have 3 posted ,go to the one w all the replies, the 2 prior postings w my name doesnt have my story i am new to the site and the first two i listed i did incorrectly so there blank. But back to ur issue, yes i highly recommend the stimulater , but not the one that gets inplanted, at my site you will find all the info on what i am using along with my meds. after 3rd day of using this unit along with my med changes, my pain scale has gone from a 200 to a 3. good luck to u, hang in there , there is hope and i hope my posting with my info helps you, let me know what happens and what u think,.. RENE :)

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Hi babydollbeck,
Just found your posting regarding Spinal Cord Stimulator from Boston Scientific. I had the trial 3 weeks ago for 1 week and it changed my life...I am mourning it's removal. I am waiting to be scheduled for the implant at this time.
I did not have to have a psych eval though...hmm thought that was an interesting twist. I am being seen at a military hospital, and do see a civilian mental health provider.
I also suffer from failed back surgery syndrome. TLIF @ L5S1 with a subsequent repair due to a fall, so much PT, can't even list it all, back brace, TENS unit, which does help. MUCH medication, and MUCH misery. I am SO done. I just want my life back and this will give it to me.
My spine is a mess... arthritis, bone spurs, facet joints that are damaged, nerve damage, bulging and herniated discs...you name it, I have it. My pain doc just sez "you have a really jacked up back."
I hope this helps you, and wish you well.

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hennygirl if you see a mental health provider they probably didnt need the psych eval. I too had to have one. I am so glad to hear that the stimulator works for people. I did the trial for a week and was really hoping it would have worked for me. I was in the ER twice that week in excruciating pain and couldnt walk : (

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I guess I'm the odd ball out since I don't need to go for a psych eval. Don't know if it's because I've been battling the pain for 7 years or because of the amount of research I have done or because my Pain Mgmt Office is tired of lugging around my 10 lb file, don't know! I did tell my pain mgmt dr that I was tired of all the bullshit and it was time to finally do something and that I know how much relief I get out of my tens unit, but I want more relief without all the sticky goo and extra wires....plus get me off the damn pills...I also told him that I know that morphine is supposed to be "management meds, but they are the ones who made me the addict I am today........60mgs a day is tooo much for someone who only weighs 120lbs and I should have some benefit, but don't anymore". Guess my mouth got me into trouble, or did it? I got his permission and blessings for SCS, he's gonna get me into my trial next week!

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To Rene, I can't find your thread about the stimulator you are using. Pain AND spasms here.

jerry

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Dear babydollbeck - sorry I just saw your post today. By now you've probably had your surgery. Was it successful?! Please report back if you have relief or not. The implants seem to be the way Pain Managment is going. I had a doctor who offered the Medtronic models and went over them with me in detail. My problem at the time was that I traveled a great deal and even with a note from my physician since after 911 - I was going to be taken out of line every time and fully searched. I was told that by the Airport Security Supervisor as I was doing all kinds of research to make up my mind. It was when I found out that my doctor got paid for each unit he implanted that I told the doctor I thought it was unethical and he told me he'd sue me if I ever mentioned to others he had this "arrangement". Since it looks like a "kickback" and he wanted to keep decreasing my pain meds (I didn't know why - but now I know - he made me feel like some sort of addict.) - no wonder he got a bit upset with me - going so far as to push me into a door jam because he wasn't "finished talking with me". Ta heck with him! I left - never went back. I'm not certain I want an implant - it sounded good though (and not just because the doctor was trying to get another kickback) I hope your's turned out really well for you. I don't know what I'd do with children - I'd always feel like I had to "be on!" for them when sometimes I can't even do for myself! I'm truly pulling for ya that it worked out well. I know people that started out well after surgery and not even a year later it was even worse. One can barely but sit in a recliner all day on a morphine pump. His career is gone and thank goodness his wife is an Angel. It's no way to live.

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hello baby doll i have a simulator that goes around the waist i had fusion and instrmentation 8 screws and 2 rods fused L1 L2 L3 L4 im 78% fused and its been 7 months now. they told me it would take a year. im still on restrictions I was told to take it easy. hope that helps you

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and of course i forgot i had a broken back for 40years they also fixed that

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I have a scs, implanted nov 2012. Mine, is not a positive story. It all began with the trial. which went ok. I didnt really see much improvement in my pain though. when asked, i stated that it was one of the best muscle relaxers i had ever used, but, at the same time, it magnified a stinging type pain. I was told by the surgeon and the stimulator rep that if i didnt say it improved my pain at least 50 % then ins wouldnt pay for it. I never said that. anyway, a couple weeks later, i had the surgery, unfortunately, i woke up before surgery was over, and sustaianed a laceration to my scalp that required up to six staples to close. The surgical report says the gash was less than one half inch, pictures prove that a lie. I have been seeing the same pain center dr. who referred me for the stimulator. though, he has not examined the surgical site once since the surgery. I have begged the ins co adjuster to authorize another dr. as i feel i am in a circle of business associates who are more worried about their bottom line than my health. adjuster said no, we tell you where to go. I am on the way now to having it taken out. It has never been effective for me. At this point i am not sure its not making matters worse. I get no pain meds because i tested positive for weed over a year ago, and the dr. says he has a one time fail policy. I cant take nsaids because of a history of bleeding ulcers. to the point, i almost died twice. so, for anyone thinking about this, i will say this, ask questions, get your records, and stay on top of whats going on. because from what i have learned, some people have success with the implant, and those are the ones you will hear about, and some people dont, of them your physician will not speak!

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So the 64K question is..... does a spinal stimulator work on spasms and pain by reducing both at least 75%. If not as my docs have said with what I have T11-12 XLIF fusion which has caused 40-50% disc loss 4 levels above only 2 yrs after fusion(note everybody has different results so don't take my outcome as written in stone if you are new to this site/ past experiences on here) which has sent me back into severe daily spasms/pain because of structual failure per former head of UNC Spine center who said "forget any further surgeries your spine is trying to fuse itself now on those levels" is it worth it? I know this is not a cut and dried answer but my pain management Doc who I trust 100% and my physical therapist said no "they itch and almost everybody they have seen/treated that have tried them hate them because they don't work. Gosh knows I hope they get the stem cell treatment approved if not for us for the next generation. My life....my back controls it now. After 7 yrs of pain and 2 fusions and 4 other surgeries , Facet Rhizotomies and 2 nerve openings I am just as bad as I was but...... I did it to myself from old trauma mx racing. God bless us all.

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To Jerry if you 100 % trust your doctor why are you asking us?? Not being rude but your a Man in pain and you need help. Go to another doc like I did. I had such bad pain in my left leg it was like a 2 tons of rocks roling over it all the time. I found a lazer surgeon to fix it. All the other ones said I just wanted more pain meds. Don`t give up try everyway there is its your body and life. On The spinal cord Stimulator-SCS same company as you said. I had the trial it worked great for me. The trial was real easy everyone Should do the trial. If it works for you then you can have your life back. I`m on so many pain meds I can`t think. On the trial I was almost detoxing. Took less than 50%of my meds. Best of luck Sam Ps don`t put conpany names on this site. You can take it down.

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ALL I can say is everyone reacts differently to treatments,, Ive tryed it all to, everything works great for the first month then Pain breks through and nothing works,,even MEDS,,But its woth the shot,,its always removable..Hope it works for u, ive heard both good and bad so dont get dicouraged, its just another treatment available and what do we have to loose,,THE PAIN...thats the goal, and a NORMAL life...wiching you a success, let us know what happens,,RENE :)

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I have had 2 cervical spine surgeries and they had to put metal plates and screws in the 1st time, then my symptons came back and were worse so they did another surgery to remove the plates and screws and put new ones in :( Now I am at the point where I can barely get out of bed because of the pain I am suffering with and I have 2 children that I feel like they are being deprived due to my health problems...so I did the spinal cord stimulator and it was the WORST pain I have ever gone through! If I had my choice to do it over, I would have NEVER had it done. I wasn't informed about everything that I should have been told. I go back to my surgeon at the end of this month and I have ALOT of questions for him! I pray for all of you on here that are dealing with any knd of pain, it really depresses you and you do feel alone, believe me, I know how you are feeling and i would love to stay in touch with anyone on here that wants to chat, about the stimulator or any othe conditon you are going through. Have faith in God and keep your chin up! God Bless all of you and pleae reply to this if you wouldn't mind, I just need to hear what others think about it...I AM READ TO HAVE MINE TAKEN OUT:(

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I have heard that you have to have the batteries changed in them which requires a surgery EACH time....NO way would I want that. There is a high incidence of infection with these surgeries.

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I am up for the trial in about two weeks, can anyone tell me the ups and downs of the trial and what to look out for or plan for?

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Update to my June 2012 post.

Trial was awesome. Implant has been in my spine since Aug 2012 and I'm off all pain medication! Pain went from a constant 9 to a 2 with an occasional 5 because of over doing things. I still have some heaviness feeling in my right leg, but that's usually when I walk way to far or too fast. I have the scs on 24/7 and have it programmed to change intensities when I lay down, stand, etc. Some people have problems charging but I have learned the tricks. Just remember that your nerves get used to the stimulator and reprogramming is a must, especially when the pain starts to set it.
The battery pack that is implanted in your rear-end only needs to be changed every 10 years and it isn't a major thing. The only reason your battery pack would need to be changed sooner is if you let it die and it can only be "jump started" 3 times. I came close, but caught it just in time so I've never had to be "jump started". The way you know it died is because it will shut off the stimulator and you won't vibrate anymore!

I love my stimulator and would do it all over again. The pain while healing wasn't all that bad, but the changing of habits for 6 weeks was kinda hard....no bending, no twisting, etc. And after healing up my sex life got better....

Good Luck to all!

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Hi all this last may my siatic nerve in my left leg went crazy. There is no pain pill on the market that would help. I was giving a tense machine vandvit works great for me. I was told they wouldn't fix my cushion lodged into my spinal chord. They wanted me to get this implant. So I came home and thought about it I got a surgeon in michigan to fix the problem I'm not all healed yet but I'm betr. If I had not called him I'm afraid I couldn't handle the paincany longer.

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I had a neurospinal stimulator by Medtronics for many years. Initially placed for back pain, I found that it did not relieve the pain in my lower back but it did, miraculously relieve the chronic nerve pain in my neck! After 4 surgical procedures I was left with FMS and a chronic, unbearable pain my my right upper back, and the stimulator took care of that pain, eventually - not all at once but gradually it dissipated. I wonder if the stimulator did it for time, although my neurosurgeon told me that he thought I would die having that pain.
However I supposed my back was too far gone and after seeing a surgeon whose fellowship is in less invasive spinal surgery, he put rods and pins in my lower back to stabilize a tenuous situation. I did OK after that surgery but noticed that my stimulator was no longer working, so thought perhaps I needed a new battery. When that was not the problem and due to the inconvenience of not being able to have a MRI due to the stimulator, I had it removed.
This was supposed to be a 1 1/2 hr surgery with an overnight stay in hospital. However my surgeon found that the leads had corroded and were in hundreds of tiny pieces throughout my lumbar spine. It took 2 surgeons 3 1/2 hours to remove them all and I woke up in pain I had never felt before! Not able to take opiates, I was proud of my ability to bear pain using biofeedback, etc., but this time I actually heard myself scream. I would rather have 10 babies one after another with no anesthesia than go through the aftermath of that surgery. I wound up having another laminectomy and am now totally dependent on a walker and cannot stand on my own for over 10 minutes. My husband, thankfully now retired, had to take over the kitchen and my life has changed forever. The nerve pain in my feet was unbearable until I found some natural medication on-line and that has literally saved my life! I can ride in a car any distance without having the pain and crawling in my lower legs, but I would NEVER have the stimulator inserted had I known this outcome! Surely there should be some relief for anyone who has had such equipment failure like corroded leads, but so far I have not found but a very few who had this happen. I know Medtronics was most anxious to contact my surgeon when I called about sending the stimulator back to them and when I told them why it was removed. I just wonder how often his has happened, and why?
Please take my story into consideration before you have this device placed - it has been the devil and the the angel but I would rather put up the pain I had before it was inserted than the pain I am having now, and will have for the rest of my life. It has certainly changed my thoughts on life and death and I know now that with the pain I have now on a daily basis and the change in my life statis, I would not go through any further surgery for any other condition. I have had it! Enough is enough! I am DONE! And all because of the corrosion of the leads from my Medtronics stimulator. Quality of life no longer exists.

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I have had my SCS for 3 yrs It has worked well for me.

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I had a nerve stimulater put in six weeks ago it was the worst pain I had ever experienced and the healing is aggravating as well . I have stinging in the back of my head still and numbness In my head as well . They placed the battery back under my shoulder blade that sticks out and when I lean on something or wear a bra it gets sore . I'm praying this subsides fast because it's truly driving me crazy.

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Hello babydollbeck,
I just had my Medtronic spinal cord stim implanted 9 weeks ago. I was a bit overwhelmed, to say the least, when I left the hospital! I now have a device that I have to keep track of, I apply it to my implant unit to get the device to raise or lower the intensity. I'm finding that the trial device, and the surgical device are two so totally opposite and different devices that it was more than I was expecting when I got out of surgery. I'm noticing that the leads give some, very minimal help, in my L-4, L-5, and sciatic nerves which is where most of my pain originated. Now, however my pain is excruciating in my neck, thoracic and shoulders?
It's as if the device is pain specific and doesn't assist in giving any relief to other areas of your body. You will be carrying a cell phone device with a transmitter wire attached to it. Then you will need to charge your implant continuously, mine only charges to 3/4 fill in the battery.

I was very optimistic and open minded to the idea of the neat, new technology (which has been in use for the past 20 yrs.) it's just something I had never seen, experienced or was familiar with and the DO working on me kept pushing for me to have the procedure and I kept thinking he must know what's best for all the damaged nerves I'm living with.
At this point, I'm a mess, as I said it's been 9 weeks. I twisted a week ago Monday. Lifting my small dog and my husband says it looks as though I have bruising around the leads! So, in summary, shock after surgery, (all the equipment battery chargers, etc) having the device recalibrated several times to get a comfortable, most beneficial treatment from the device. Still experiencing pain, not only where it originated, but in several new areas. And now having to be seen today to have X-rays to ensure I didn't inadvertently pull a lead off!?!?

Quite frankly, I'm very scared, I've been ill with flu like symptoms, since this situation of Friday a week ago.
But, I don't want you to feel that my experiences are going to be yours. The first couple weeks, after the shock of, "the suitcase" I now have to be concerned with to ensure everything is charged and working. I truly thought I felt a huge change in my legs and low back! So, I may just have done something that is exclusively my own problem, however, if a very small twist can cause a "lead" to pull loose, it's a bit disconcerting to me.

I wish you all the best. Do yourself a favor, educate yourself, weigh the pros and cons and don't be afraid to talk to everybody involved in your health!

Best wishes again!
Sincerely,
Fishnette11

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I have a trial right now. It was fine for a few day. Then at work. My feet and legs began to feel numb. I turned it off. After they stayed the same . Iam lying here in bed with the feeling that it's still on low. My lower body is feeling numb. I hope it goes away when they remove it tomorrow.

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hello my name is Larry. I had a trial if I wanted it after talking with a pain management doctor I got a second opinion with my spine surgeon, I went and had more surgery I had a cushion that was into my spinal chord and I also had a broken bone by my tail bone which caused the cushion to go into my spinal chord more screws and a plate I'm lots better. glad I didn't have to experience more pain with the simulator. good luck to all of you.

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hello my name is larry I read your article , and I must say I feel your pain most of my prob, are my lumbar area my first surgery 8 screws down there and two rods, 6 years later I cant hardly move I go to hospital and see a pain management guy gives me a shot in that area they took 15 xrays all that and mri over god knows how many mri. he told me that he want to put a wire in my spine and do this stimulator device , I have had lots of pain in my like my back has been broke two times now. anyway after I got done talking to this guy I was almost to the point of ending my lfe because of the pain in my siatic nerve was giving me. so I called my spine surgeon in Michigan. I sent him my mri. he called me back in two days told me to get up there he was going to take that out of my spinal chord, I am so glad I did, and my vertabre was also broke so that got fixed. I cannot bend but at least my pain is slowly disappearing . thank god. there is something wrong is why there is pain all the pics mris all that stuff sometimes tells whats up sometimes it don't. my surgeon told me after surgery I didn't see where your back was broke.. I wish you all well.

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Thank you all for sharing your stories about spinal cord stimulation! While this is an older post, we wanted to chime in with a new spinal cord stimulation resource we recently released on SpineUniverse.

This article is a great place to start as you explore this treatment: ( Spinal Cord Stimulation for Chronic Pain: What You Need to Know ).

If you're weighing whether to pursue a back pain treatment, learning as much as you can about it is so important. We hope this information helps as you decide whether spinal cord stimulation is right for you.

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