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 08-18-2017, 01:04 PM #1
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Originally Posted by PurpleFoot721 View Post
Thank you Catra! I'm sure if you and your doctor keep on fighting for it, they will eventually give approval for you to go ahead with the trial. I know you have been having so many difficulties with your insurance for some time now. That has to be so frustrating!

My trial ended Tuesday afternoon and we returned back home yesterday. I wish I could keep the device in for a little longer while they worked on getting approval from my insurance for the permanent device, but it was nice to be able to take a shower once we got back to the hotel for the evening which I could not do during the trial. All in all, the doctors and I were extremely pleased with the results of the trial during the past week even though I did have a few problems that were quickly taken care of. The only real complaint that I had was how temperamental the device was on how I was positioned. If I was lying down, or standing or sitting with my back slightly arched, I would get a little paresthesia. If I was a little hunched over or slouching at all, I would get no relief. I guess that means that I will have to watch how I sit or lie down from now on if I want good relief without the paresthesia going on, but of the many treatments I have tried so far, this is the only one that has given good results. Since I was getting good pain relief and can see me starting to get my life back, I can easily put that off to the side and not really complain about it at all.

Since we were all so pleased with the results, they are trying to get insurance approval for the permanent device. If everything goes well, I should be getting that sometime mid to late September. My fingers are crossed that everything goes through without any problems.
I am so, so happy for you. Do they think with the permanent device that there will be less issues with the placement of the leads since they will be implanted? I hope that's the case for you...because if you have NO side effects AND get relief that would be so fantastic. But I agree...even if I had to be careful in order to get relief...I'd BE careful...lol. Oh...I know you've struggled for so long and I am just so happy to hear of you getting good relief. I have my fingers crossed for you.
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Old 08-19-2017, 01:03 PM #2
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I am so, so happy for you. Do they think with the permanent device that there will be less issues with the placement of the leads since they will be implanted?
With the leads being implanted there will be no chance of them accidentally being tugged by anything. They also assured me that because it is a permanent device, the leads are anchored and there is less chance of them moving around at all. Hopefully the permanent device works at least as well as the temporary one did with fewer complications. Not that I had all that many.
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Old 08-19-2017, 09:23 PM #3
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Alaina,
Thankfully the rep was able to reprogram. I can understand movement may cause the leads which are not implanted to move causing various sensations. Even tho the device is permanent; if any similarity to an SCS, the leads can still move or migrate; just not as easily (Also, scar tissue that holds the leads in place can also sometimes cause a bit of movement. So either way; best to play it safe and take extra care.

Again, thanks for the updates.

Special thoughts coming your way.....

Gerry
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Old 08-25-2017, 04:41 AM #4
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If the leads have less chance of moving around with permanent implantation and compared to a regular device, then that's progress.

I hope you can get the OK for a permanent device (or is that done already). Here in this country for any type of stimulation device, you first need to take the trial, and then pending on that and a few other things you get approval yay or nay.
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- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 08-26-2017, 11:13 AM #5
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If the leads have less chance of moving around with permanent implantation and compared to a regular device, then that's progress.

I hope you can get the OK for a permanent device (or is that done already). Here in this country for any type of stimulation device, you first need to take the trial, and then pending on that and a few other things you get approval yay or nay.

That's pretty much the same here; I first had to get approved for the trial with the SCS by my PM and a psychologist. Then, as you mentioned; pending on that, etc., you may get approval.


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Old 08-26-2017, 01:46 PM #6
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It is the same with the DRG stimulator. I have already been given the approval from my PM and the psychologist. I am just waiting for approval from my insurance now.
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Old 06-20-2018, 05:05 PM #7
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I haven't been too active on here in the last year and I wanted to post an update. I did have the permanent device implanted back in September, and although it hasn't been working near as well as the trial went, it has given me part of my life back. On any given day, my pain level is fairly steady at around a 3, which is far better than where I was a year ago. I just finished up with physical therapy a couple of weeks ago, being released because my therapist felt that I was no longer making any improvements that couldn't be made with at home exercises. I push myself every day and found just the other day that I am now able to get out and ride my bicycle for over 4 miles. Come fall, I am registered to take classes at a local university and hopefully continue to do well.

I'm hoping that this will be an inspiration to those that are feeling like there is no hope. Hold on, keep working with your medical team, and don't give up. Something will eventually help. It all just takes time and patience.
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Old 10-06-2021, 01:22 PM #8
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Reading stories of implants, ketamine and spinal fusion are shocking to me and crude with the patient suffering from invasive sometimes permanent treatment that is experimental. It's a freaking crime doctors are doing this to desperate and suffering people. I refused to do it. Most of the time it makes things worse. My shoulder surgeon was afraid to give me a cortisone injection worried it would bring CRPS to that area. It didn't. But what about a spinal fusion or implant surgery. Were they worried about that? No, didn’t even know it was a problem. Pitiful and scary. Crude at best. Wishing all a recovery with neridronate infusions. Bug your representatives for trials of Italian drug here. We can beat this nightmare. Love and hope to you all. S
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Old 10-16-2021, 11:04 AM #9
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Originally Posted by Sandoggie View Post
Reading stories of implants, ketamine and spinal fusion are shocking to me and crude with the patient suffering from invasive sometimes permanent treatment that is experimental. It's a freaking crime doctors are doing this to desperate and suffering people. I refused to do it. Most of the time it makes things worse. My shoulder surgeon was afraid to give me a cortisone injection worried it would bring CRPS to that area. It didn't. But what about a spinal fusion or implant surgery. Were they worried about that? No, didn’t even know it was a problem. Pitiful and scary. Crude at best. Wishing all a recovery with neridronate infusions. Bug your representatives for trials of Italian drug here. We can beat this nightmare. Love and hope to you all. S
Neridronate = a bisphosponate medication. It is available worldwide. There is absolutely zero need to travel to Italy for it, when it is locally available. Key is just to find a doctor that works with it. Most RSD aware rheumatologists will be able to help you!

Just FYI!
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- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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