Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 12-03-2009, 09:20 PM #1
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Default Spinal Cord Stimulator/ Epidural Catheter(Tunneled) anyone?

HI,
Thanks for coming :]
I am getting my Spinal Cord Stimulator in next week and I wanted to know if anyone who's had it or knows of it could shed some light my way.

Also my doctor is debating on giving me an Epidural Catheter(Tunneled) too, so if you have any advice for me, I would love to hear it.

Since I am only 17 my mom is against both, so I am trying to convince her they are okay, but all I can find on the Catheter is that it gives most people an infection so...can anyone prove this wrong?

Thank you :]
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Old 12-03-2009, 11:32 PM #2
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did u have the trial scs first? i had the trial, it worked great, then when i had the perm it did not help at all. my pain spread- originally was fingers to elbow- after the implant the pain went to my neck. my back was constantly hurting from the lead, my hip always hurt where the battery was. i got shocked all the time... i had it reprogrammed several times and nothing helped. there are quite a few others i know that have had a lot of issues with theirs.... yet there are also those who have good results. i however wouldn't recommend it. i ended up turning it off after about 6 months, and removed a year later


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Originally Posted by Enjny View Post
HI,
Thanks for coming :]
I am getting my Spinal Cord Stimulator in next week and I wanted to know if anyone who's had it or knows of it could shed some light my way.

Also my doctor is debating on giving me an Epidural Catheter(Tunneled) too, so if you have any advice for me, I would love to hear it.

Since I am only 17 my mom is against both, so I am trying to convince her they are okay, but all I can find on the Catheter is that it gives most people an infection so...can anyone prove this wrong?

Thank you :]
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Old 12-04-2009, 09:00 AM #3
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Hope you can read this. I'm in the hospital just finishing my pain pump trial. I've also had 2scs. Like others the scs trail helped more then the perm. I had my oridinal for a year then because the b attery moved and the lead pulled out, they needed to replace the unit. they did and I develped an infection and they had to pull the 2nd unit out. I'm now finishing my 4 day pain pump trial. It hasn't been as easy as I thought. They started with morphine, which left me so so very sick. they stopped that and now they have put fuiluide in. it seems to be ok. I just don't know if I wnt the perm. my meds worked just as well, just did n't let e drive or anything. I'll be thinking hard about it the next week. I really think the pain pump works best of the two. I would n't get anything till I had the trial of both.

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Old 12-04-2009, 02:28 PM #4
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Thank you so much, both of you.
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Old 12-05-2009, 04:38 PM #5
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17 is young, but it's good that you're asking for experiences from others...

A SCS is not a cure. It's one of many different types of treatment. It's an invasive procedure (back surgery). A SCS is not a magical device that will end all your problems. There are alternatives. I'd not do anything invasive until you've exhausted all other options. Let the doctors try medication and other treatments first. A SCS or pain pump is basically given when nothing else works.

I think your mom is right about being hesitant towards anything invasive at your age.
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Old 12-07-2009, 05:08 AM #6
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I got my spinal cord stimulator put in when i was 19. feel free to give me a call.. or email me. send me a private message and i will get you my information. i live in california, and tomorrow i am seeing my doctor actually about ketamine. I will talk to you and my mom can talk to your mom as well to make you f eel more comfortable. please call or email
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Old 12-07-2009, 03:10 PM #7
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I am waiting now on my approval for my scs, from WC. They suprised me and approved a series of 3 spinal blocks, which did not work. I have been trying to find as much info on the scs as possible, I have been in such agony and have had no relief from meds, blocks and feel the scs is a hopeful prospect. Any thoughts?
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Old 12-07-2009, 10:50 PM #8
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Please get a second opinion you are way to young for this you need to try some other things.
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Old 12-08-2009, 11:38 AM #9
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Default I have 2 scs and love them

I have 2 scs implants (one for lower extremities, one for upper extremities) and love them both. Had them for 6 months now, and they provide a lot of comfort to my nerve pain. It really is true, though, that is NOT a cure, but a form of therapy. You will still have the same limitations on yourself and still get flare-ups. On the negative (for me) is that the 2 battery implants puts added pressure on my lower back. Overall, I'm happy with them
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Old 12-08-2009, 12:33 PM #10
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I was going to get both the tec and then possibly the scs. Both were ruled out for the time being since my pain increased from lidocaine infusion and block. Are you under care in at Cleveland Clinic as that seems to be the place who always suggests the tec? The thought for the TEC is that it wil enableyou to do extreme physical therapy which in turn is supposed to help your rsd limb to get mobile again and then in turn helps with pain. My fear is delayed pain so after the tec was to come out would I get delayed pain. There are usually steps before these 2 procedures such as the meds and blocks. Have you had those?Then would be a temp scs? I know a girl your age that after the tec,blocks,meds,and 2 previous temp scs she now has the perm scs and seems to be doing a lot better but then I know some who have had not good results. The problem with our condition is what may work for one may not for another. I also encourage if you have not seen more then one doc for pain that you get a nd opinion before you do a big procedure. If you or your mom even wants to email me I am here as I know how my mom felt so helpless and lost and talking to a girl who had rsd for awhile helped her.
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