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Old 10-02-2006, 03:16 AM   #1
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martra1025 HB User
SPINAL CORD STIMULATOR feedback

Hi everyone.....my husbandhas RSD in his right hand and his Pain Management doc wants to put in a Spinal Cord Stimulator. I started to research it and of course get conflicting information. I was hoping I could get some feedback from those of you who have had a Spinal Cord Stimulator. Thanks!

 
Old 10-02-2006, 07:05 AM   #2
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cattys HB User
Re: SPINAL CORD STIMULATOR feedback

Hi Martra,

I have a scs for my arm, hand. It is implanted in my upper cervical neck. My battery is implanted under my arm. This is my second scs. The first one I had was a god send and helped me a great deal but had to be removed because it got infected.. The second one which I have know Is a big disapointment. It worked until about into the second year then the stimulation got real sporatic. I get stimulation everywhere now and it is uncomfortable. My dr wants to put a whole new system in but I am not gonna do it.

Everyone is different for some people the scs give them back there lives. It is a big decision to make.

Take care
cattys

 
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Old 10-02-2006, 06:00 PM   #3
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LLS1948 HB User
Re: SPINAL CORD STIMULATOR feedback

Well, that is such a big decision to make!! I have RSD in my right leg, knee down into my foot. It started in 2000 and just recently had spread into my foot. I made the decision this past spring that I couldn't take this anymore and that we were going to do the trial for the scs. This summer did the trial and fell in love!!!!!!!! The relief was unbelievable and I had my life back!!!!!!!!! Because of work schedules I had to wait until September to get the full implant done. But from my experience for now at least it is giving me my life back!! I can do things I couldn't experience before. People are telling me they no longer look at me and see pain on my face - more a glow back! I have a spring in my walk again!! So yes, my life is taking a turn for the better! Now I have no idea how long this will last. Maybe a year, maybe two, maybe only 6 months. BUT when you have RSD and live with this awful horrible pain even just 6 months of this kind of relief is worth it!!! At least for me it is! To be able to enjoy my family, and my life for even a short while and have some happiness is worth it to me. So everyone will have their own decisions to make that are personal for them. You too will have your own. But you will weigh the good and bad and don't let anyone make you feel badly for making that decision either way - it's a personal one! If I can give you any information about the actual procedure I had done I would be more than happy to answer those questions for you!!! Just let me know, okay? Take care, Lori

 
Old 10-02-2006, 06:05 PM   #4
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martra1025 HB User
Re: SPINAL CORD STIMULATOR feedback

Hi cattys and Lori,
Thanks for the replies. We're not sure if SCS is the way to go. At the moment he is having a pretty bad flare. Lots of pain and swelling. It is heartbreaking to watch him suffer. I wish there was something I could do.

Since being diagnosed with RSD (in May 06 after injury in Feb. 06) he has had 3 Stellate Ganglion Blocks which provided little relief. He has been taking different meds, current ones being cymbalta and celebrex and percocet and dilaudid for the severe pain. He also had the cervical epidural catheter for 4 days which was great while it was in. He was doing pretty good for about 6 weeks with tolerable pain until last week when for whatever reason the pain became unbearable again. That's when the pain mgmt doc suggested SCS saying that was the last thing they could do for him. I just don't like what I have read about it. It could make RSD worse, etc. We have a few weeks to decide. I just wouldn't want his pain to become worse.

Lori, i would like specifics on the procedure you had done and any other info you think would be useful. Thanks so much

Thanks for letting ramble on.

Tracy

Last edited by martra1025; 10-02-2006 at 06:08 PM.

 
Old 10-02-2006, 10:25 PM   #5
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Re: SPINAL CORD STIMULATOR feedback

Hi Tracy....WELCOME. I think it's AWESOME that you are looking for support and for all the information you can to help you and your husband deal with the RSD. It is very fustrating.

I also have SCS....6 weeks ago. RSD in upper body. I will say I have had trouble...but I think everyone is different. I would recommend having your husband have the trial stimulator. It will help you to make a decision. I seen the Dr. today regarding my stim. he did say that stimulators are easier to control when put in lower back for lower body pain. That when placed in neck they move around more so less control. I am not willing to have anymore surgery at this point....my pain is worse than ever since my surgery. I wish you and your husband the best. Dee

 
Old 10-04-2006, 08:46 PM   #6
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LLS1948 HB User
Re: SPINAL CORD STIMULATOR feedback

You had asked me to post about my actual procedure! Well, the trial is slightly different than the implant. During the trial I was completely awake. After they take you in and get you ready, they start putting the wire in the spinal column. I will be honest saying that I was in pain but it's not excrutiating. During that time they are talking to you because before long you are communicating to them what you are feeling whether they are stimulating your leg or arm or what. So you have to be awake! They program it and take you back out, let you wake up somewhat from the sedation and send you on your way. During the implant, it's different in that for me I was first totally put to sleep, and then half way through the surgery they woke me up, and I had to do a similar thing in relaying information to them about how the stimulation was and how that was feeling. Then once they had it set well and I was getting good coverage they put me back to sleep once again. I woke up back in my recovery spot. Now, once I woke up I will tell you the pain is pretty intense. Getting up and down from a laying down position was very difficult for me and had to have assistance especially the first day. My husband would nearly have to lift me up and lay me down. The first three days afterwards are the worst. You definetely need pain killers, Vicoden or Percoset. Then weaning them out after that. You can't lift anything over 3 pounds, turn, bend down, or lift high over your head for about six weeks. Some on here were saying they weren't allowed to drive, I didn't have that restriction. I have just been VERY careful driving!!!!!!! I do no more twisting or turning in that than I would in my sleep, and it just can't be helped - I have to work. I'm about 3 weeks out and my pain relief is great, the pain from the surgery is significantly decreased!!!!!!!! When I go back at the end of October we will start weaning me off some of my medications and that will be the true test of how this is working. But I'm remaining very hopeful that this is my answer to my prayers! It can be for you but it's not for everyone! I agree with Dee that the only way to find out is the trial. If I can answer any more of your questions, please feel free to ask! I'd be happy to help anyone that is struggling with this decision.

 
Old 10-08-2006, 08:01 PM   #7
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pooh_ac HB User
Re: SPINAL CORD STIMULATOR feedback

Hello, I will let you know that I have had 3 (yes 3) spinal cord stimulators since April of 2003, I had a battery give up the ghost, then broke a lead when I fell and dislocated my shoulder. My current unit is a Medtronic Restore due to my high energy use. I am here to tell you if it quit tomorrow I would be back on the table in an instant. The comparison is not being able to function to living a fairly normal life! The recovery time is at times a pain in the rear as I feel good and would like to do more, but I have learned to listen to the doc and be a good old woman as it is well worth the time.
If I was to do it over again I might have asked for more info up front but did a ton of research on the net signed up with Medtronic support and a couple of other sites that make neurostimulators. Find out which company your doc works with then do a mega search and good luck!
pooh

 
Old 12-26-2006, 07:21 AM   #8
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kk29049 HB User
Re: SPINAL CORD STIMULATOR feedback

I just signed up to this board and would like to know if any of the people that posted "say a year ago" are still around.

I am looking for feedback on the implanted SCS units. How they work, do they move, how often they need to be removed and replaced or any other information you may have on the subject.

Thank you
Johnny

 
Old 03-04-2007, 05:49 AM   #9
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kneegirl HB User
Re: SPINAL CORD STIMULATOR feedback

YOu give me such hope! I also have pain in my knee (after a total knee replacement) down to my foot. The trial was 100% successful. Do you have a rechargeable battery- if so, what do you think vs. the non rechargeable. the MEdtronic tech. told me the pulse rate was high on my setting, but said it's my decision. Thanks for your help!
Sue

 
Old 03-05-2007, 08:14 PM   #10
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redeeminggrace HB User
Re: SPINAL CORD STIMULATOR feedback

To all those who are considering a SCS...
I have had mine since October 2006. The unit works fine for some types of relief. It does not cover all pain, but it definetly helps. I drive anywhere form 16 to over 200 miles a day doing advertising and you can't have the SCS on while driving but afterwords or before definitly... I have to have a replacement done on the 29th of this month. The Medtronics I have is defective, as I have stated before it overheats and is now discharging in me. Please do not let this issue dissuade you from getting one. Medtronics makes a gazillion of them. Only a small fraction go bad. I am having another put in so that should say something for it. God bless and I hope it works out well for you... In His Service... Bernie

 
Old 03-31-2007, 06:05 PM   #11
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Re: SPINAL CORD STIMULATOR feedback

Quote:
Originally Posted by redeeminggrace View Post
To all those who are considering a SCS...
I have had mine since October 2006. The unit works fine for some types of relief. It does not cover all pain, but it definetly helps. I drive anywhere form 16 to over 200 miles a day doing advertising and you can't have the SCS on while driving but afterwords or before definitly... I have to have a replacement done on the 29th of this month. The Medtronics I have is defective, as I have stated before it overheats and is now discharging in me. Please do not let this issue dissuade you from getting one. Medtronics makes a gazillion of them. Only a small fraction go bad. I am having another put in so that should say something for it. God bless and I hope it works out well for you... In His Service... Bernie
Hi my name is Mandy and Im from australia. Ive had rsd for 3yrs spead to all my limbs. I had the scs inplant 2006 a medtronics device. I have to say it worked ok for me. the neuropathic pain is no longer intense but i still have it. I have a better quality of life.Its only there for my legs although.I am nolonger on crutches and i go for a walk for an hour every day. Pain and all, I use my mp3 player turn it up really high and try and concentrate on that rather than my pain. I am trying to use the mind over matter approach.sometimes its ok and then other days I could just SCREAM.
thanks for listening
mandy

 
Old 04-06-2007, 11:32 AM   #12
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djmcmullen HB User
Re: SPINAL CORD STIMULATOR feedback

I'm very interested in this thread because one of my options for my next steps is an SCS. Right now I have a catheter pump in, so if that doesnt work we move on. I was told if I get the SCS that I would be able to have a baby, which I would just LOVE. My husband and I do not have children and my biological clock is really ticking. I know rationally with my pain level it would be hard to look after a baby, but if the SCS works then maybe I could have a somewhat normal life?

One thing I was wondering, how many of you with the SCS work? The pain and medications keep me from working right now and its hard living on one salary.

 
Old 04-06-2007, 02:50 PM   #13
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jo1234 HB User
Re: SPINAL CORD STIMULATOR feedback

Be careful. There are differences between the 2 main manufacturers of SCS. One is Medtronics (which I had and loved) and ANS a system that I just recently had taken out and can't believe how good I feel.

I would do a study on both. talk to your physician. How many of each does he/she insert, the success rate, can you talk to a pt of his about it? Compare them both because ANS did not fit in at all with my lifestyle. Medtronics was a much more press the button and go. My PMD still tells me that the ANS system is the most powerful, but for me it never worked like my other one. As I said I had it removed after less than a year and I am looking back with no regrets.
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Old 04-07-2007, 01:29 PM   #14
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steelrain01 HB User
Re: SPINAL CORD STIMULATOR feedback

Bernie, I have a question for you. What systoms did you have when your scs, was defective and how what where the signs of overheating and discharging in you?
if you could get back to me on this i would greatly be appreciated. Rayne

 
Old 05-07-2008, 06:13 PM   #15
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JIDI HB User
Re: SPINAL CORD STIMULATOR feedback

why can't you wear it while driving

 
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