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Old 07-29-2012, 01:19 PM   #1
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Spinal Cord Stimulation

I know this has probably been discussed already, but I didn't want to post on an old thread.
I'm 21 and have RSD from my toes to my lower back on my right side. I've tried pretty much everything & we've decided to go through with the SCS because I can hardly walk.
I'm not worried about it because I'm just so sick of the pain that I don't care what they do, they can cut it off for all I care. However, my mom is worried and wants to know more about it and the success rate. I knew this was the place to go to get answers. So, can anyone tell me anything? Thanks in advance!

 
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Old 07-29-2012, 07:02 PM   #2
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Re: Spinal Cord Stimulation

Hi, Afb.

I can't speak for the overall success rate, only my own experiences, which have been positive. I was dx over a year ago with RSD in left foot/calf shortly after foot surgery. It spread and worsened so quickly that it was in late stage 3 by the time they caught it. Spinal blocks failed, so only option left was SCS to try to stop the spread and save the foot.

Before the SCS implant, my foot was 3-4 times its normal size and looked like a giant purple grape that was ready to explode. I had the implant last Sept, and now the foot is almost the same size as my "good" foot and pink/red rather than purple. It still turns purple and some days it's more swollen than others, but I would consider the SCS a success in my case. Before the implant, my foot would spasm so violently that it would kick sheets off the couch. Now that rarely happens. The stabbing pain is less severe, but still exists (and likely always will, as that's RSD), so pain meds are needed for that. That said, because my RSD is so severe, SCS didn't result in a promise that I would walk again, but it did give me a 5% chance (and, if so, not for at least 3 years) that I didn't have before.

So, in sum, the implant stopped the spread at the knee, reduced the swelling, intensity of spasms and of stabbing pain. It still hurts every second of my life (I know that's not what you want to hear--sorry), but I can't imagine what shape I would be in without the SCS implant. It doesn't work for everybody, and, of course, it depends on the severity of your RSD and a number of other individual medical factors that I'm sure your doc has discussed with you. But, like you, I figured if this is my only hope, then it's worth a try. If it doesn't work, they can take it out. For me, I'm glad I tried it.

Also, they do a test implant first to see if it will work before they do surgery for the permanent implant. I hope that gives you some peace of mind.

I hope that helps! Good luck to you.

Last edited by Hushie; 07-29-2012 at 07:10 PM.

 
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Old 07-29-2012, 09:27 PM   #3
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Re: Spinal Cord Stimulation

60% get RSD at the incision sites but even some of those say they are better off.
You need to be aware that some have to have furter operations because of moving leads or failing batteries and each time there is a risk of more RSD.
Some have had to have them removed because it has actually made things worse.
I think nowadays they can do a trial first before actually inserting it so if you decide to go for it insist on that first.

 
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Old 07-30-2012, 07:50 PM   #4
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Re: Spinal Cord Stimulation

I want to thank you both for being so honest! I needed to hear that. I am still going through with it and I'm waiting to find out when i start the trial. I DO understand that it could spread to the incision sites, but I am willing to give it a shot. The trial will tell me if I will be able to tolerate it. I really hope that it works. I know that my pain won't go away, but it could reduce my level of pain and maybe I won't have a leg with such bright colors that people ask questions. I am ready for the pain to reduce and the questions to stop! I understand that it may not work for me, but all I can do is pray that it does! So, thank you both for your help. I will tell my mom all of the good stuff and hopefully she will feel better about it. Thank you both again!!!!

 
Old 07-31-2012, 04:27 PM   #5
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Re: Spinal Cord Stimulation

Hi, Afb. I know what you mean about all the questions about the foot. It seems you can't leave the house without every stranger you meet asking you what's wrong with your foot. I just tell them it's nerve damage. That usually shuts them down. Hope that helps, and good luck with your SCS trial. Let us know how it works out!

 
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Old 08-01-2012, 09:11 PM   #6
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Re: Spinal Cord Stimulation

Thank you for the encouragement and I pray that your daughter stays in remission.

 
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Old 08-02-2012, 06:53 AM   #7
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Smile Re: Spinal Cord Stimulation

Quote:
Originally Posted by afb004 View Post
I know this has probably been discussed already, but I didn't want to post on an old thread.
I'm 21 and have RSD from my toes to my lower back on my right side. I've tried pretty much everything & we've decided to go through with the SCS because I can hardly walk.
I'm not worried about it because I'm just so sick of the pain that I don't care what they do, they can cut it off for all I care. However, my mom is worried and wants to know more about it and the success rate. I knew this was the place to go to get answers. So, can anyone tell me anything? Thanks in advance!
Hi,

I had my SCS put in in March of 2010 and in my case, Thank God. I don't know where I would be without it. My medication consumption have lessoned and if I'm having a "bad" day I have the option of turning my "machine" up or my Break-through medication. Again I have heard it is not for everyone, but my Doctor did a Trial on me with an externa unit, to see if I could handle the sensations before We made the decission. I also went and spoke to a psycologist pre-surgery. What ever you decide< I recommend a trial and I wish you well.

Please feel free to contact me for anything if you have any other "experience questions", I can certainly give you mine.

Sincerely,

Jeri W

PS, I am 57 and have had this going on since I injured myself in 2000, I am now looking forward to a (L) Knee Replacement in September. My problem is on my Left side from bottom of foot up leg, and across hips and starting down right side, I understand.

 
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Old 08-29-2012, 07:43 PM   #8
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Re: Spinal Cord Stimulation

I had my first SCS put in 2008 and it did help some. It wasn't the answer to relieve the pain. I try to tell people it is like if you have ringing in your ears and you turn up the tv. I, unfortunately, had severe pain at the battery site. I was seeing a different doctor who thought the St Jude's SCS would help me more than the Boston Scientific did. I also started getting back pain from either the surgeries, injections, or using a cane to favor my bad leg. I had another surgery to remove old implant/battery and put a new one in. I think that was the biggest mistake I made. I now have more pain in my back where they did the surgeries. The new SCS has 16 leads and even though it is placed correctly (per my doctor) only two of the leads are helping my left leg and I am getting no coverage for my back (which is what they promised before I agreed to the surgery). I think as long as you don't get pain from surgery sites (battery or back) it would be worth it. Good Luck!! All we can do is try.... and pray!!

 
Old 09-02-2012, 01:09 PM   #9
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Re: Spinal Cord Stimulation

Hello afb... I just joined this board. You are the first one I'm sending a msg to.
I have spinal And rsd Problems all mixed in . Please know that others know your pain, and will try to help.
I just wanted to make sure that I had i had my spinal cord stimulator implanted 5 years ago. Please make sure that you have insurance, if you ddecide to go for it.
MY pain was NOT explainable.
I Used a spine surgeon here in NY, that used stimulators made by a company in a town in Plano, tx.
They let you try a SCS for a week, it's not implanted, but you can see if you like it.

im my case(b.t.w. it's installed, in my case in the early am....i was home by the afternoon.

when i woke up from the anesthesia..... the dr was there, and the guy from the implant co. were there....
at first i was dissapointed because the pain was so bad that , well u can imagine. then they said are you awake and ready to try it......
they turned it on to one random setting.... and the pain that were giving me mick jagger nightmares(lol) for so long, with the push of a button, was gone....replaced by a mild pleasing tingle.....it was amazing.

9ok..hope i helped. Dennis

 
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Old 09-25-2012, 07:52 PM   #10
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Re: Spinal Cord Stimulation

Thank you everyone for all of your support and information. I just finished with the trial and it was amazing!!!!!!!!!! I almost cried when they took it out because I wanted it back. They are going to be putting the permanent one in on November 20th. I can't wait, expecially since it has started to spread up my back.

 
Old 09-25-2012, 09:29 PM   #11
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Re: Spinal Cord Stimulation

Did the spread start after the trial

 
Old 09-26-2012, 07:35 PM   #12
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Re: Spinal Cord Stimulation

That's wonderful!! I've been checking back now and again to see how it went. I'm so happy to hear that it worked for you, but I'm so sorry to hear of the spread. I'll be thinking good thoughts for you. Hopefully, the spread will be slow and the implant will stop it in its tracks.

Last edited by Hushie; 09-26-2012 at 07:37 PM.

 
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