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 11-10-2009, 05:07 PM #1
krank krank is offline
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I just stumbled in here and seen this thread. I am setup for a trial medtronics scs for the week of thanksgiving. Its comforting to hear that medtronics is a good company to work with. They are telling me this is my last option. Right now I guess I will do anything to get rid of some of the pain. Im ready to go in the garage and take care of it myself. My insurance is a little different, I have a railroad to deal with instead of wc. So I cant comment on wc or ssdi. Thanx to all for the info and questions. This is a great forum. Krank
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Old 11-10-2009, 05:24 PM #2
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Hi Krank.

What do you mean go into the garage and take care of it myself???? You should never have a last option. Maybe this is the option for you the the trial. By the way welcome, you will learn a lot here and you will receive a lot of support...I will pray that you will have pain free days.

Sandy

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Originally Posted by krank View Post
I just stumbled in here and seen this thread. I am setup for a trial medtronics scs for the week of thanksgiving. Its comforting to hear that medtronics is a good company to work with. They are telling me this is my last option. Right now I guess I will do anything to get rid of some of the pain. Im ready to go in the garage and take care of it myself. My insurance is a little different, I have a railroad to deal with instead of wc. So I cant comment on wc or ssdi. Thanx to all for the info and questions. This is a great forum. Krank
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Old 11-10-2009, 10:40 PM #3
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Krank,

The scs isn't the last resort. I had 2 of them already,and I've been without one for a year now. I go in the beginning of Dec, Dec,1st to be exact, to get the pain pump trial. THe pain pump is for those who want and n eed a very active life. I have a horse farm and I ride horses. I need to get back to it again. with the scs I couldn't ever ride again. with the pump I can, after it heals, and all. even the book and dvd medtronics puts out talks about being able to ride a horse again after the pump. My PM hates the pump...dead set against it. I took matters into my own hand, found a dr. that would do it, and as long as they were in the insurance acceptance group I could have it done. Of course, needed everything redone, psych exam, etc, but that's ok...I will be able to drive and have my life again. don't give us

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Old 11-12-2009, 09:51 AM #4
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Default scs & other treatments

I'm glad to hear someone positive about scs . i had the trial for my arm and had relief but did got positional change and was getting down legs too. dr suggested laminectomy type better for positional change. i would rather do percutaneous type b/c it isnt as much surgery to put in or take out. Glad to hear you had laminectomy and are doing good. i hesitate b/c of the limitations after getting scs. do you feel limited? were you able to decrease your medications? i am now researching ketamine inf. i feel such pressure to do something in fear that it may spread. i am starting psch for visualization and relaxation to help get myself emotionally prepared to try one of the treatments.Thanks for sharing your info. momof4
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Old 11-12-2009, 01:27 PM #5
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Thanks Mary and everyone. Well I had my shrink eval yesterday and he thought I would be a great fit for an scs. The funny thing was that I happened to be just down the hall from the Pm guy with all the scs posters on the wall. I have to admit his office looked a little more professional. I did ask him about the pain pump and he told me they are way too much up keep for you. He must have seen the look on my face because he immediately says well the option is up to you but I still highly recommend a scs. We decided to push the trial back another week to have more time to think about this. I know this really isn't my last option, but by talking to any of these guys they make it sound like it's 2012 or something. Does anyone know what the permanent restrictions are for a scs? I guess what I am really asking is what kind of life are you left with when the implant is all healed. Thanx Krank
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Old 11-12-2009, 01:42 PM #6
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You are getting lots of good info. I am the one who posted having the lamanectomy type SCS- Medtronic- Yes there are permanent limitations,discuss these with your Dr. Everyone if different. I do not necessarilly like being limited,but BETTER than not being able to walk at all.Get all of the info that you can to make the right choice for YOU! Will keep you in my thoughts and prayers-Fondly-Carol
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Old 11-12-2009, 02:30 PM #7
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well, I can I only tell you what I know, and it's only my perspective. I've had the scs the first one for over a year. There was a lot that I couldn't do that I really wanted to be able to do. But i was willing to accept that I would never do the things that I loved to do again as it meant a reduction of pain. In one way the best thing that ever happend is that I got a mrsa infections and had to have my 2nd one out. That was over a year ago. With the pain pump, after I heal, there are very few restriction. I have a horse farm. I want to, I need to, ride my horses again. I love amusement parks. I want to be able to ride the rides, with the pain pump I can, with the scs, I can't. with the scs you have to have your system adjusted, recharge the battery, what have you. WIth the pain pump, (for both this is after the recovery), I can ride horses, motorcycles, (if I wanted to), ride amusement rides, move around without worring about pulling the leads out etc. Yes you do have to have your pump refilled. Most of the time this is every 4 mos. or so. A lot of drs. don't like to put the pump in. why? I don't know. it does take a while to get the meds to the right cocktail and amt. the drs have to really really work to make it work. the dr is really the one that makes the pump sucessful. if they don't want to regulate the meds, or take the time and trial to find what works, then the pump will not work for you. with the scs, they put it in, and that is it. the company rep takes over the programming etc of the unit. with the pump, the drs have to stay connected with you to monator everything. a lot of drs don't want the hassle or the committment. easier to put it in and wash their hands of you. You will see them only if you run into a problem. and that is after the company rep has worked with you over and over and over. PM me if you would, and I'll hook you up with a group that deals only with pump questions.

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Mary
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Old 11-14-2009, 02:03 PM #8
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Default Hang in there...

Hi Krank,

Your medtronics person with your PM Dr. are the best people to talk to about restrictions. Our rep has been wonderful, as well as our PM Dr. My husband doesnt not like the feeling of pain meds and they mess with his stomach and interrupts his ability to hold a cdl license. He feels he would have more "restrictions" without the scs than with it. He is now 2 weeks into his scs and although sore for the surgery, is happy with the pain relief he has recieved. He has almost completely backed off from his pain meds. They really are only relieving the pain from surgery sites as the scs is taking care of the pain from rsd.

Hope railroad is better than wc-at our hearing wc dr said it wasn't rsd, but a psycholgical issue that makes my husband think he has rsd... couldnt' believe my ears....
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Old 11-14-2009, 03:13 PM #9
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a piece i left out regarding the pain meds was that they gave him a minimal amount of relief, especially in comparasion to the scs trail
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Old 11-15-2009, 04:21 PM #10
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Default SCS info... and ? concerning SSD

Quote:
Originally Posted by rsdwife View Post
a piece i left out regarding the pain meds was that they gave him a minimal amount of relief, especially in comparasion to the scs trail
I have the SCS for about 14 months now.. My trial went well so I decided I would benefit from the permanent implant.. Unfortunately.. my SCS actually hurts my RSD when I have it turned on.... it makes the pain heighten...... even with tweeking.. I am going to leave it in as to help with my "good" leg as the RSD has now spread... Sorry to share bad news..I realize everyone is different.. it was not a bad surgery nor many limitations.. I know it is in my body.. cords up my back, internally and box is in my lower left hip area..

As far as SSDI... can anyone shed some info on that..Is it true that they no longer recongize RSD as an approved disability????? Pain of a 42 on a scale of 50...I would hope so!!
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