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 11-07-2009, 04:56 PM #1
rsdwife rsdwife is offline
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Its been months since I've been here. We are still battling workmans comp to accept my husband's rsd as an accepted condition. Hearing next Tuesday. Meanwhile we used our private insurance to go ahead with the trial, and finally last week had the permanent one implanted. Would love to talk with someone who has had the procedure. My husband felt an immeadiate relief when it was turned on. We believe this is going to be a great alternative to the meds he's been on for over year now....
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Old 11-07-2009, 08:10 PM #2
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Quote:
Originally Posted by rsdwife View Post
Its been months since I've been here. We are still battling workmans comp to accept my husband's rsd as an accepted condition. Hearing next Tuesday. Meanwhile we used our private insurance to go ahead with the trial, and finally last week had the permanent one implanted. Would love to talk with someone who has had the procedure. My husband felt an immeadiate relief when it was turned on. We believe this is going to be a great alternative to the meds he's been on for over year now....
Welcome back! The federal government's SSID accepts RSD has reason for federal aid. There are many on here that have been accepted for Diasability Compensation. Do you have a WC attorney? I didn't have a wc case, but if I had, I personally would use a good WC attorney. Lawsuits have been won with RSD injuries. I'm sure others that have exact information or who have been thru your circumstances will respond.
Happy to learn of your husband's SCS results. Take care, loretta
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Old 11-07-2009, 10:48 PM #3
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Loretta,
I also have had the scs. in fact I've had 2. The first one needed to be replace after a year, and the 2nd one only lasted a couple of weeks before I developed MRSA infections. I loved the trial, and was ok with the scs. It turned out the leads moved, and the battery which was in my right butt cheek, rotated around. that is why I had to have the 1st one replaced. I'm now going to get the pain pump trial. Hopefully within the next 2 weeks. I still don't have anything bad to say about the scs. I just decided that the pain pump would be a better match for me. I ride horses, and with the scs, I wasn't going to be able to do that again. Alot more restirctions with the scs then the pump. You have to make sure that hubby doesn't try and do to much for the first couple of months. I don't care how good he says he feels, he's not to bend, stretch, pick up anything heaver then a gallon of milk. If you don't follow the instructions at the beginning, you will be setting yourself up for more surgery, as the leads will move b efore the become scared in. Make sure he listens. I'd be glad to answer any question syou may have. If you want to PM me, I'll answer anything honestly. There were some questions that I couldn't ask, and I wish I had.

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Mary
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Old 11-09-2009, 12:35 AM #4
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thanks mary,

Thanks for the reminders about his limitations. I will keep my eye on him. He is very anxious to get back to work... he drives with a cdl license and cannot do so while on pain meds so hopefully this will be the answer. So far so good, no infection, the leads seem to be holding in place. The dr said it would take a good 6 weeks for the leads to scar into place. AS time goes by, i'm sure i will have questions.. i would love to be able to ask you as they come up.

April
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Old 11-09-2009, 12:40 AM #5
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We do have a wc attorney.. didn't think we needed one at first.. but am so glad we have one now. He have a hearing Tuesday to try and havae them accept rsd as a condition. As of now they have accepted a left shoulder and left wrist sprain. Its been 1.5 years since his accident. We just want this to be done with, get him as good as its going to get, and move on.

Thanks for your support!

April
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Old 11-09-2009, 12:41 AM #6
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PLEASE KEEP US UPDATED. My SSDI attorney just quoted that the administration is no longer accepting RSD, nor FM as a diagnosis. I sure hope he is wrong & it looks like he is according to everyone here.

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Its been months since I've been here. We are still battling workmans comp to accept my husband's rsd as an accepted condition. Hearing next Tuesday. Meanwhile we used our private insurance to go ahead with the trial, and finally last week had the permanent one implanted. Would love to talk with someone who has had the procedure. My husband felt an immeadiate relief when it was turned on. We believe this is going to be a great alternative to the meds he's been on for over year now....
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Old 11-09-2009, 08:37 AM #7
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I don't have an SCS as the UK don't seem to do them in any children under the age of 16 and even in adults, they only seem to use them as a last resort so can't help you on that unfortunately.

Just wanted to write though and say that it's good to see you around again and that I have been thinking about you both. I hope your husbands operation went well and that he continues to get relief from the SCS.

You're both in my thoughts!

Alison.
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Old 11-10-2009, 03:24 PM #8
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I have had my SCS for a little over a year now. I was desperate for relief and can honestly say that without it I would probably be in a wheelchair by now as I was barely able to walk. The most important thing is to be as still as possible for 6-8 weeks so everything can scar over. I was told to usr the BLT method-no bending,lifting,twisting. I Had no surgery complications at all-Is it perfect no-but at least I can walk around now. I struggle with the leads in spine-mine was a lamanectomy type-not the kind pain Drs. do- Done by neurosurgeon and a lot more surgery than I expected,but all in all I am satisfied. Your manufactures Rep is vital- I have Medtronic-as reprograming as needed is really necessary. I have a great Rep and we have a good raport. Good luck!!!!
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Old 11-10-2009, 05:07 PM #9
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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 #10
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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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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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