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Old 08-10-2009, 08:11 AM   #31
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Sherckle HB User
Re: Removal of Spinal Cord Stimulator.

what did he replace it with?

 
Old 08-10-2009, 09:17 PM   #32
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Re: Removal of Spinal Cord Stimulator.

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

 
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Old 10-15-2009, 07:55 PM   #33
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TcRadioDJ HB User
Re: Removal of Spinal Cord Stimulator.

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.

 
Old 10-16-2009, 09:07 AM   #34
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scioladyohio HB User
Red face Re: Removal of Spinal Cord Stimulator.

Quote:
Originally Posted by foreverangel143 View Post
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

 
Old 10-16-2009, 09:29 AM   #35
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scioladyohio HB User
Re: Removal of Spinal Cord Stimulator.

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

 
Old 10-27-2009, 12:37 PM   #36
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luvlifeagain HB User
Unhappy Re: Removal of Spinal Cord Stimulator.

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

 
Old 08-07-2010, 01:15 PM   #37
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scioladyohio HB User
Re: Removal of Spinal Cord Stimulator.

Quote:
Originally Posted by tigerlily11 View Post
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.

 
Old 01-21-2011, 01:25 PM   #38
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jmatlow HB User
Re: Removal of Spinal Cord Stimulator.

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...

 
Old 01-23-2011, 09:47 AM   #39
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scioladyohio HB User
Re: Removal of Spinal Cord Stimulator.

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.

 
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Old 01-23-2011, 10:09 AM   #40
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jmatlow HB User
Re: Removal of Spinal Cord Stimulator.

Quote:
Originally Posted by scioladyohio View Post
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...

Best of luck with it.

 
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