[
I appear to have had an excellent pm doctor. He explained everything and I had sessions with the Precision rep who tried very hard to program my stimulator to no avail. It took 6 mths for me to convince the Dr. I wanted it removed. Done with absolutely no problems. Mine was not a w/comp but I have private health insurance which covered the procedure in a private hospital. Unfortunately I am scheduled for more unavoidable surgery and the pm Dr suggested I may need strong pain relief but I prefer to go without the stimulator!!
I am now doing more than I could with the stimulator in
Don't forget, we have to have a positive attitude and do all we can to help ourselves at all times.
Best wishes from Australia.
Last edited by ally79; 07-06-2009 at 11:49 PM.
The Following User Says Thank You to ally79 For This Useful Post: gabiegirl (01-19-2012)
Hi everyone-
I've been off/on this site since Jan. To make a very long story short; I agreed to a scs as I was told by a Medronic rep that 95% of all cases of rsd are halted where they exist at the moment; I was in terrible, terrible pain, hated being on all the heavy duty drugs, what a mess the drugs made of my personal life (I have rsd in my right elbow that now has moved up to my shoulder & down to my hand with my fingers growing knobs on the joints and now both my hands hurt terribly along with all the burning from my elbow to my armpit daily). I had the scs put in Sept. 08. It never ever worked past the back of my shoulder blade, they did a revision, sent me to Cleveland Clinic for an analysis (they said they could not get any better coverage either), then my pm por (yes, this is workman's comp - in a horrible economy where healthy people are looking for work, who's going to want a cripple that's doesn't have the ablitity to control my hand, not to mention the pain (again) and then there's no one to help me keep my home; I have no choice it seems but to do every stupid medical procedure they want, frankly they have me over a barrel)....the last revision of the lead wires didn't work; the pm doc sent me to yet another ortho surgeon who is "absolutely sure he can get coverage down my arm to my hand" like I didn't hear this in quote from the pm doctor. Dear God, what do I do now? anyone out there? I just so desperately want to back to work and take care of myself, find my own doctors, find other answers for this awful rsd that is so so bad at nite, normally a 10. I've read and printed alot of the answers from the stimulator site for my family to read; their just afraid I'll not do what the wc doc's want; I'll lose my home and probably worried I'll be a problem of their's then...I'd rather be a baglady at this point. Anyone, anywhere have any words of wisdom. I feel so alone and it just doesn't look to get any better. in any event, thanks for listening, and prayers for those in any kind of pain. S.
Hi Sciolady,
I know the pain, and especially the burning pain very well...my P.M. doc wanted me to get a SCS and gave me the video and the brochures, etc, etc, and kept telling me it would take care of the pain and I should do it...and she even made me feel guilty for not agreeing and doing the SCS...(or acutally, I made myself feel guilty..but she kept pushing it on me!!)
After research and all the reading on the message boards, I decided there were more risks than were being revealed.
Sooo, please get yourself an attorney who can review your rights with you...you are the one who decides on what to do with your body and what procedures, meds, etc, you want to take...W.C. can't force you to do what they want..I know it is a catch 22..because if you start to assert yourself, they become hostile..that's why you need an attorney!!! Make sure it is a good one.
I wish I had more experience with the SCS to be able to share with you but my main point is that you can decide what to do with yourself!! And they will intimitate you..oh yes they will!!!
I am wishing you ways to learn to cope with your pain...There are a lot of books and helpful methods (such as Mindfully Based Stress Reduction, pain management workbooks that help with strategies and methods to cope with pain..Has our pain doc referred you to a pain psych?
I am trying to learn and not do "catastrophy" thinking...thinking of the future and all the terrible things that can go wrong...like losing my job, not being able to pay the mortgage...who will take care of my 97 year old mother if I can't..etc, etc, etc, etc. I am trying to take one day at a time (very hard to do, I know) but I am trying ..and meditation helps me with this.
Thinking of you, xo
Warm hugs,
Tigerlily
Hi Tigerlily & all hurting like hell & it doesnt' look to get any better. I've tried & tried to keep the faith " I live with rsd it doesn't live w/ me." ha. Not doing so good I guess, I know I need a pscyh dr. to talk to to help me deal w/ it all but it doesn't look like my pm doctor gives a hoot whether I need help in dealing with this crap...but; I will talk to him and see where it goes. But thank you for your caring thoughts. I'm just so tired of my daughters (both no-nonsense rn's that believe I ought to try yet again to get the leads to work with a different orth surgeon). They just don't get how horrible it was when they woke me up trying to force the lead from should on past to my arm...I get sick to my stomach thinking about it. Guess I need to toughen up, huh?! Others work while in awful pain, surely I ought to be able to....boy, am I tired. well, again thanks for hugs, support. I don't think for the most part, anyone understands, maybe they just don't want to be bother (family, friends). God, I hate to be a hassle, burden on anyone. well, guess it's 4:30 am now - may be I can try to sleep, or not. Take good care & may the angels look over you all. Sherry
Hi Sherry,
It was 4:30 a.m. when you wrote your last post so you must have been sooo exhausted..
I hope you are able to get some good restorative sleep as that makes all the difference.
Do you think you might need to see a new pain doc if you think that this one doesn't really give a hoot about you?..Please check to see what your rights are with WC in your state ...you NEED help with the psychological upheaval of RSD..and a doc that is more understanding and will hear and listen to you!!
I know it's hard for you right now..you have people in your family advising you what to do...but in the end, you are the one who has to live with the pain, the procedures, the consequences of treatments so you need to listen to yourself ...and educate yourself as much as possible which you've probably already done..
Thanking of you and hoping you get some rest and relief..
Hugs from Tigerlily
I need to have my scs removed. Has anyone had that done?
Hi, I had mine removed in May this year and although I still have pain I am so much more comfortable and no longer have the extra pain the scs was giving me.
Go for it! Good luck!
Hi Tigerlily;
just a update; seen the new ortho surgeon - took him x-rays, reports he never received from my pain/main dr. - did my research on him; "supposed" to be the best in eastern Ohio; much to my own, I don't even know what to call it - "just plain sure that he won't get the stimulation down my arm either" gutfeeling (but I haven't been right about anything from the start of this rsd thing)....I'm going in again in 2 days for him to put in a double paddle, since he's the only one that believe's the rsd is now in my left hand too...I just keep thinking lately; the neurontin, vicodin (the pm dr. wants me off of - can anyone imagine? I quit the oxycoton myself (made a mess of my financials as I could not think straight at all on this stuff); methodone helped immensely but left me totally one hundred percent lethargic so I asked him to back me down to Vicodin for pain (I was determined to just learn to live with this; 3 months ago ) but you all have read what a mess I've become because the pains' now unbearable nearly all the time...anyways, the meds are racking havic on my stomach (oh, had to have gallbladder surgery in May too along the way here) but now my stomach is beginning to bother alll the time...I just can't take the drugs....I hate them. I'm taking Zanaflex for the muscle spasms which does't seem to do much either so I've decided to let him try....and I know Tigerlily (thank you so much for your kindness, responding to me in such a touching manner...I can't tell you how I appreciate that)....I wonder why as you all do why in the world have decided to let them try this one more time...it's the drugs & how they make me feel...this is going to be tough; their even moving the stimulator from my butt cheek (oh, how comfy that's been) to under my right rib & he's going up into my C7 vetebre? (sorry for the spelling, getting tired) to try to get the stimulation down both my arms? But I'm here to you all; I'll keep in touch - let you know IF this time is different & works at all; maybe there will be something here for anyone even considering these stupidstimulators...personally; I don't think they've done enough research on these things to know much about them anywhere, no matter where you are located. And just so you know this too...both doctors have told me now that 75% of all original leads move and unless they are surgically attached to your vertebre they are going to move and not provide stimulation where you need it. So anyone out there considering this thing....keep in mind; these pain mainagement doctors that can work on your C4 verbetre to try to provide stimulation but the leads that aren't securely anchored in the first place are goingto move & it is a waste of your time. I've gone this far; I'm going to do this....I can't stand the drugs but drugs it will be if this doesn't work ( and yes, I've also read where orginally this kind of surgery works, at first, then yet again in a few months the stimulation stops yet again) .... I'll let you all know how this goes. I've got to quit feeling sorry for myself...become strong again & move on....one way or another. Thanks for listening...and thank you so much Tigerlily; you are right tho; my family's been a push for this...and I've got a new 3 month old granddaughter that I desperately want to be able to hold and babysit. I''m doing this for (her) Mallorie too. wish me well, I'll try to keep you all updated and maybe there will be something for all of us to learn here. Take good care Tigerlily & you all, God Bless & Keep You. Scioladyohio
Last edited by scioladyohio; 08-10-2009 at 07:53 AM.
Reason: no name
Hi Sherry,,
My heart goes out to you...you're going through so much..
Since you've decided to continue on with the SCS process, think positively that this might be the adjustment that works..
Take one step at a time....get through this and see how it goes...
Yes, the drugs wreak havoc in our brains and bodies...
Have you ever considered a pump so that the drugs can be localized?
At least your ortho thinks the RSD might be in your left hand too instead of denying that possibility.
Easier said than done (big huge understatement) but try to ease into the pain instead of resisting it because the resistance makes it worse..
Try and stay strong, there will be a solution...
Your little granddaughter is very lucky to have such a brave and loving grandma.
Hang in there,,think of us on the boards for strength..
Well... I am really kinda bummed out about loosing my spinal cord stumulator. I fought for a long time to get one and now its gone.
I developed a severe infection and body rejection of the unit. So severe and so fast I was actually only hours from death. It has been a very rough few days. It all happend only thursday. (today is wednesday for those that read this later).... Thursday I went in for programming. I was having issues with poor coverage of the stimulator. The programming went well. I was having some discomfort with the surgical site however. I wanted to have the nurse there look at it. She did. I ended up going to the ER to have another doctor also look at it. Both of them said that I have an infection and then they started me on antibiotics/ammoxocillin. By friday, I hadn't taken any yet, however friday, I got a call from another pain clinic I see and they said to come in and they also would check it out. They took fluids from both sites that were infected. Drained them down for me. But by the next day they were full again. They decided to give me a different antibiotic/kelfex. I started taking that right away. Although I found it hard on the stomach, I managed to make it to sunday. Sunday was bad. I ended up with a fever of 103.6f, extremely fatigued, serious all over body aches. I really felt like the flu, but only worse. I thought well maybe I got the swine flu that was going around. But no, it was the infection from the stimulator. I had no clue that it would only take a couple of days from just noticing there was a problem to now a full emergency situation. I laid in bed, sweating, freezing, just miserable. I felt like my eyes were burning out of my head and that I was starting to get a pretty bad headache on top of everything else. I laid here in bed, with my cell phone next to me ready to dial 911. I had a friend bring over some juice pops and sierra mist. I kept pushing myself to eat this cold stuff to try and get the fever down, on top of taking lots of tylonel. It worked, helped enough to make it to Monday morning when I got a phone call at 8:15am saying I need to get to the hospital right away for surgery. I was shocked but said ok. I knew then that I had a staff infection and that I was loosing my stimulator. I got a friend to bring me because I was way to weak to drive. She even had to help me out of bed, get me dressed and into the car. (I live alone) We got to the hospital and my orders were already there. It took no time to get me registered and preopped. I then had the surgery not only to remove the stimulator, but now also to remove the massive infection in 2 places in my back. I am not exactly sure how they do that, but I understand that they make the pockets at least twice the size they were and use suction to clean there area similar to weight loss surgery. Surgery went well, Well I guess as well as it could. I was then brought into recovery where I spent 3 hours. I then got up to my room.
I had 2 suction packs also attached to both sites to help remove any more buildup of infection and fluids. I just had those removed today.
It has been a tough experience for me to say the least, but I would say, if you ever notice anything even slightly wrong with your incision site, take it to your installer right away. Alot of normal MD's do not understand that 5% of all stimulator/pain pump surgeries end up with infection. I at this point have found myself feeling hopless, wishing I would just die. Honestly, I am tired of living, tired of the pain, tired of the disappointments, tired of fighting. I really wish I was gone. To live with chronic pain, we all know that suffer from it, depression is a common "side effect" of pain. It still does not help anything especially having to wait so long to move forward, now to only have to move backwards again. I have opted to see a therapist about my feelings. Maybe, they will give me a good enough reason to keep going....I don't see one.
HI Havent been here in awhile. My question is has anyone every had their spinal cord Stimulator removed? Mine stopped working 5 months ago and they said it must be a lead. I had to wait 5 months to get it approved by WC and in that time I weighted the pros and cons of having it remove. This is the second time the leads have come loose. While I was waiting to get approve had to make the descision wheather to fix it or take it out. Well as you see I have decided to take it out. When I had the trial it seemed to work well it covered my whole hand and wrist where the pain was. When I had it permanetly put in with a laminatony for the lead paddle it seem to only cover the inner side of my hand, wrist and most of my pain was on the outer side, well in the operation i was woken up and I told them repeatedly that it was not covering the whole area. When I awoke in recovery the stimulator would not work at all. They discovered that the lead broke away from the battery pack. (more surgery) The stimulator never did its job properly, ex: if I tured my neck to the right the stimulator would completely turn off. I told the dr several times and he said he would not touch it fearing I would lose it all. So when it stop working all together I decided to take it out. I just want to know if anyone here has had their spinal cord stimulator removed and what should I expect. Thanks for all the information you can give me.
Anne Marie
Hi everyone;
It's me Scioladyohio. Haven't been here for awhile either...I had my stimulator moved from my backside to my stomach area with really attractive wires that wrap around my side (yes, their very visable & they ache something terrible if I have to turn the stimulator up enough to cover up, and yes, that's all stimulators do is cover the pain up some) and then like another I just read, they did the neck partial laminatomy which was as awful as one can imagine,it's been 2 1/2 months & I still cannot left my granddaugher who is 6 months old & only 16 pds. My pm dr. is now sending me to physical therapy because they keep revisising my stimulator (and I do get stimulation to my right hand and inside my elbow) but not to the top of my elbow on up to my shoulder where its truly unbearable; I turn the stimulator way up I get some stimulation in my left arm, hand but guess where it doesn't go, my left thumb where I had a knot & terrible pain in my thumb; then the stimulation picks up down on my tailbone, (this is craziness) and down my legs & all kinds of different places. I can't believe the pm dr. is sending for physical therapy, think he's completely baffled; my hand is cold as ice most of the time. I understand everyone's frustration; from my heart...I am so sorry for all of your pain, the removals, the infections, oh dear Lord; what are they doing to us? I woke up night before last with horrible horrible pain in my right arm, felt like someone had hold my right hand was twisting my elbow one way & my shoulder another, I haven't had anything like that happen in a while, I took my Zanaflex, thought it was muscle spasm, I turned my stimulator way up, I took my xanax (a nurse practioner told me that I needed to talk to a dr. about Valium, it helps alot with muscle & nerve pain they've just discovered), I took my Vicodin (I told my pm dr. I was sick of pills, I really wanted to just try to del with the pain with the stimulator, boy was that a major mistake)....and of course I took my Neurontin...all the med I have. And a pm doctor that doesn't seem to have any other ideas on what to do for me but send me for physical therapy. Well, folks, before I totally loose my mind...my lawyer has gotten wc to pay for me to see a psychologist...like someone else said...is it time to just give up? I didn't just loose a job when this got bad, I lost a career. Sorry if I sound so pathetic; I'l find my strength again soon; and I will pray for all of you too. Take good care, keep the faith. Scioladyohio
Recently diagnosed with CRPS2 in hand, arm shoulder and scapula. on meds, tried stellate blocks and now am trialing elec. stimulator implant. What problems can arise having an implant? I hate the fact that when i reposition myself the current is different. with the trial at times i get it in both arms, back, butt and legs and feet. going to reprogram tomorrow. does anyone know if trial goes in different limbs is it more likely the permanent implant will too? I don't know if i trust implant rep. if anyone has had implant were you able to get off most of your meds? do you like it? i am active i am worried about changing with position. Please help me decide. Thanks D
Hi Sherry,,
My heart goes out to you...you're going through so much..
Since you've decided to continue on with the SCS process, think positively that this might be the adjustment that works..
Take one step at a time....get through this and see how it goes...
Yes, the drugs wreak havoc in our brains and bodies...
Have you ever considered a pump so that the drugs can be localized?
At least your ortho thinks the RSD might be in your left hand too instead of denying that possibility.
Easier said than done (big huge understatement) but try to ease into the pain instead of resisting it because the resistance makes it worse..
Try and stay strong, there will be a solution...
Your little granddaughter is very lucky to have such a brave and loving grandma.
Hang in there,,think of us on the boards for strength..
many healing hugs
Tigerlily xoxo
Hello TigerLily; hope u're out there somewhere. Hope u're doing well; well as can be expected. You gave me more hope than anyone anywhere ever did since i've been diagnosed with rsd. It's now almost a yr. later; I've been thru the relocation of the scs to my stomach which scares me to death daily. I've also had to have it replaced as it "popped" out of the pocket in my stomach where it is located. I get stimulation where they wanted it but I'm sorry to say that the burning in the original site (my right elbow) is bad enough now to come thru the stimulation of the scs (if this makes any sense). My shoulder is as bad as my elbow. I still have to deal constantly with workers compensation which is so so stressful; I know this isn't helping anything. I'm in a deep depression now for which I see a psychiatrist & psychologist. I hate being on antidepressants; seems after the first month or so, the depression is back if not worse. I know I have to call them about this but I've gotten to where it's difficult to even talk about any of this with family, doctors, anyone. I just zone out. I hate that every single person that has asked for me to explain rsd says "well, luckily you're not in a wheelchair & there are people worse off than you". So it goes. I've made the mistake of being on the computer too long today. I had to tell my daughter for the first time I can't keep my granddaughter overnite. This day just sucks. Oh well; I was sifting thru the threads, reading here & there, posting some & seen your reply when I was going this a year ago. Thanks for all the support. It actually even comforts me now.
I'm going to be having my SCS lead removed from my neck surgically in about 10 days. It was implanted in 2007, never really helped (sadly only the trial was useful). It eventually stopped working, and the Boston Sci engineer who tested it, in 2008 told me that the four contacts where I needed it most had failed (infinite impedance, which means the wires broke). He blamed me for breaking the lead (no doubt to try to avoid any hint of liability on Boston Sci's part). My surgeons said to leave it unless it caused problems.
Recently I started getting zapping from my neck down to my toes, and so my surgeon is going to take it out now.
Bottom line, from what I've heard from people, SCS can be very helpful for lumbar spine problems, but is basically useless for cervical spine.
I hope that all of you who are suffering get relief from your pain...
Hello. I too have been considering having my scs removed. My rsd originally started in my elbow; went to my hand where then they convinced me that in so many percentile that the scs would stop the rsd from moving. Well either the leads are laying on nerves in my shoulder or the rsd is there now too. I too cannot turn the stimulator on for any long length of time; I walk around looking like my head is trying desperately to get away from my shoulders. I'm going to make a decision before I see the dr. at the pm. I too had the double paddles put in my neck. I also get neck pain from the scs. I look forward also to anyone who has had the lamectomy & then the scs; paddle, etc removed. The pain management dr. sent a report to workman's comp saying pain meds were also were not a "long term fix" whatever. wish i didn't need a pill one; worried what the neurontin is going to do to me longterm too. worry, worry. Know how you all feel out there.
The following 2 users give hugs of support to: scioladyohio gabiegirl (01-19-2012), jmatlow (01-23-2011)
Hello. I too have been considering having my scs removed. My rsd originally started in my elbow; went to my hand where then they convinced me that in so many percentile that the scs would stop the rsd from moving. Well either the leads are laying on nerves in my shoulder or the rsd is there now too. I too cannot turn the stimulator on for any long length of time; I walk around looking like my head is trying desperately to get away from my shoulders. I'm going to make a decision before I see the dr. at the pm. I too had the double paddles put in my neck. I also get neck pain from the scs. I look forward also to anyone who has had the lamectomy & then the scs; paddle, etc removed. The pain management dr. sent a report to workman's comp saying pain meds were also were not a "long term fix" whatever. wish i didn't need a pill one; worried what the neurontin is going to do to me longterm too. worry, worry. Know how you all feel out there.
I'm actually going to be on narcotics the rest of my life (it's not RSD in my case but a neck injury from my Navy days). I'm trying to wean myself off neurontin as we speak because of all the side effects and clashes with other meds. That being said, it's not going well, and my pain level is way up (I am down from 3200 a day to 2000 a day right now).
As to removing the lead from your neck, the calculus that two neurosurgeons (1 in Philly, 1 in Tacoma) gave me was that if the lead was causing no problems, it's best to leave it there. Once the lead is causing problems, it's best to remove it, and so sadly, in your case, it sounds like you're headed back to the OR as well...
Re: Removal of Spinal Cord Stimulator. 
Re: Removal of Spinal Cord Stimulator. 
