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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 09-25-2011, 12:29 PM   #1
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Question Spinal Cord Stimulator for RSD

Hi! Since I'm new to this board, please bear with me. I'm still learning how to navigate my way around. Anyway, I'm in the process of getting insurance approval for a trial SCS. I'm a little nervous about it, but my doctor feels this is one of the last options. I've already done therapy, water therapy, ganglion stellate blocks, TENS unit, and most of the meds. Recently the pain is so bad that right now I'm not working (standing and walking 80% of the day was killing me). I was just wondering if anyone has had the SCS, and what kind of success or problems you have had. Any help would be greatly appreciated.

 
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Old 09-25-2011, 04:17 PM   #2
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Re: Spinal Cord Stimulator for RSD

Well, I told you my story, and you can do a search for when I was asking questions about it. I did learn that you don't have to have it turned up really high to still have it work. It worked best at a low level. I had a lot of positional changes, esp with the trial. The permanent one (I had the paddle leads) worked where the positional changes weren't that bad. I did turn it off at night, or really, really low, because when you lie on your back the stimulation will increase dramatically.

The trial was not nearly as great as the real thing. My trial leads moved quite a bit on my back. Make sure you note each day how the trial is going. There was some question for me whether the leads were better at the end of the trial or at the beginning. I said the beginning, the rep thought maybe the end.

Anyway, if you have any questions, let me know and I'll try and answer them.

 
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Old 09-26-2011, 12:11 PM   #3
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Re: Spinal Cord Stimulator for RSD

Quote:
Originally Posted by Boat Girl View Post
Hi! Since I'm new to this board, please bear with me. I'm still learning how to navigate my way around. Anyway, I'm in the process of getting insurance approval for a trial SCS. I'm a little nervous about it, but my doctor feels this is one of the last options. I've already done therapy, water therapy, ganglion stellate blocks, TENS unit, and most of the meds. Recently the pain is so bad that right now I'm not working (standing and walking 80% of the day was killing me). I was just wondering if anyone has had the SCS, and what kind of success or problems you have had. Any help would be greatly appreciated.
I have RSD in my feet and have a scs. It helped but not as much as I'd hoped. Part of the problem is that the stimulation went all the way down my leg to reach my foot , and since there wasn't a problem with my leg, it was ann oying. Where is your RSD?
Mark

 
Old 10-01-2011, 11:11 PM   #4
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Re: Spinal Cord Stimulator for RSD

My RSD is in my right knee, both feet, both hands(thumbs mostly) up to my shoulders. My doctor says she can be effective in all areas. If approved, I'll be getting a Boston Scientific Precision Plus stimulator.

 
Old 10-02-2011, 04:14 AM   #5
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Re: Spinal Cord Stimulator for RSD

Not wishing to minimize hope, God knows with RSD I would never want to do that to you, I do suggest that you look slightly askance at your doctor's assertion that she/ he can eliminate as much pain as she says. I pray that she can , but having lived with a SCS, I know its capabilities as well as its limitations. You, like me, will experience the SCS's sensations going down your legs in order to reach your feet. The sensation isn't unpleasant, but it seems unnecessary given that your RSD is limited to your right knee. What did you do to get so lucky? I ended up with 5 pinched nerves in my feet. Such nerves are called neuromas. I just learned that neuromas should never be surgically excised which mine were. They should be treated cryogenically. I was a teacher, but the pain was so brutal that I had to stop because I couldn't stand for very long. So what is my message? Be somewhat suspicious. I'm sure your doctor wants to help, but having had such a device for many years, I think your doctor might be overly optimistic.
Mark

 
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Old 10-03-2011, 04:13 AM   #6
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Re: Spinal Cord Stimulator for RSD

Hi Boat Girl.

Also not wishing to trample on your hopes, but I would tend to agree with Mark. I have had an ANS stimulator in some shape or form since 2006 and while I wouldn't give it up for the world, it is limited in what it can do.

I describe my CRPS pain in many different elements -
I had allodynia, that terrible nightmarish sensitivity where nothing can touch, where a breeze hurts. Prior to my SCS trial, which I had when the CRPS was only from my mid right thigh down, I was wearing pants rolled to upper thigh, no sock, no shoe. My trial gave me quite substantial relief from this and the burning skin pain only - no relief from muscle pains, no relief from the crushing bone pain, the swelling, the temperature changes. Within weeks of my permanent implant I was wearing jeans, socks, boots and walking with crutches. I had that level of relief for a good 12 months before my CRPS became more aggressive again.

Do you know how your trial will be conducted? What sort of leads will your doctor use if your trial is successful - percutaneous leads, which are placed into the spinal column using a large needle, stitched via an 'anchor' and rely mainly on scar tissue to hold them in place, or paddle leads, which generally require removal of bone for placement.

If your doctor is planning on using percutaneous leads, it might be worth asking about what's usually called a 'Permanent Staged Trial'. This is how mine was done, and I think contributed to the success. I've always felt that part of the failure rate is because they get trial leads into a good spot, patients have a good trial and then when the trial leads are removed and permanent ones implanted they never quite make it back into the correct position. I know from when my leads have shifted that sometimes just a few mm change in position can alter the stimulation pattern.

It's also important to make your trial as long as possible. Some doctors will run a trial for up to two weeks, but you really must make sure you push for at least one week as some will try to trial for only two or three days.

Did you have any success with the TENS? No success doesn't mean much (I personally found it very painful), but anecdotal evidence suggests that people who've had prior success with the TENS units often also have a better result with the SCS.

Laura

 
Old 10-03-2011, 12:39 PM   #7
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Re: Spinal Cord Stimulator for RSD

I agree with Mark, your dr my be overly optimistic. I have the Boston Scientific Precision Plus Stimulator that your dr is speaking of. I had this implanted on May 2, 2011 after 30 hours the battery quit working and would not hold a charge. The new battery was implanted on June 2, 2011 after fighting with Boston Scientific about who was going to pay for the replacement. I won that argument.

I have RSD in my left leg and now in my left shoulder and arm. The SCS does help with the RSD pain, although not as much as I had expected. I think I was overly optimistic along with my dr's. I regret getting the implant. I have had alot of complications since the surgery. The implant is sitting right on my spine as it moved in the pocket during healing and then the replacement. I have alot of lead pain that causes electrifying pain up my back. Sometimes I have to shut it off as my eyes, teeth and tongue are vibrating to the point that I have almost a migraine. During the healing process, while waiting for scar tissue to form around your leads and give a more final position of your leads, you will have sensation everywhere. My sensations went to both legs, groin area and up to my chest. I have had to turn the SCS off as it was giving me heart palpitations and was stimulating my chest wall, making it very hard to breathe. It does help with the constipation from the pain meds by stimulating my colon I guess. Although sometimes you can not control this (not a good thing). When I attempt to lay down, drive or sit it is nearly impossible to do this normally as the implant is sticking out so far (like I said it is sitting right on my spine.

I don't want to crush your hopes of pain relief, but be really sure you want this implant before you do it. If I could go back I would not do it again.

Jacque

Last edited by moderator2; 10-03-2011 at 01:03 PM.

 
Old 12-10-2011, 11:49 PM   #8
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Re: Spinal Cord Stimulator for RSD

HI. I have had rsd for about 30 years and i just had the "trial" stimulator a few months ago. It wasn't nearly as bad as I thought, but the trial was short because I moved to much and my leads moved. But it was better than the pain. My husband laughed cuz he said I actually had an ankle on that leg. So it reduced the swelling some, made my foot warmer cuz it is always ice cold and I got to take a nap for a couple of hours. Because they use the little "leads" in the trial, they can move, so if i sneezed or coughed it would move and the sensation would increase. I just had the permanent one input a couple of days before Thanksgiving. I am hoping and praying it works. They don't turn it on right away. But RSD sucks as you know, and the only other option I even have for my leg is amputation, and my pain doc said that could even make the rsd worse. so, I definitely would say it is worth the trial. God Bless and Good Luck, Palomino

 
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