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 08-19-2017, 09:23 PM #11
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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 #12
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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 #13
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Quote:
Originally Posted by CRPSbe View Post
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 #14
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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 #15
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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 06-20-2018, 05:25 PM #16
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I am so happy to hear it is still going well. A 3 is amazing! I hope you have continued relief. I got mine in December and have been so happy with it.
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Old 06-29-2018, 05:32 AM #17
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That is amazing progress. Good luck with your classes!
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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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Old 02-13-2021, 12:23 PM #18
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Well, it's been a long, long time since the last time I even checked in here let alone post anything.

I have not been doing all that well lately. My stimulator battery died back in August of 2019 while attending school, and with driving a long distance, 100 miles each way, every day to class, life really threw me for a loop. With my busy class load that I had, I was not able to have the battery replaced until January of 2020. They did end up replacing one of the two leads since it somehow became damaged. Since then, I have been getting little to no relief. With covid appearing in the US back in March of last year, making the long trip to Cleveland is no longer an option. I have met up with a rep much closer to home to have my unit reprogrammed, but I still was getting little to no relief. I have since turned the unit off and gave up on it. Now, I'm back in search for a new PM doc that is closer to home than Cleveland. Where I live, the closest doctor that I could come up with is two hours away, but has poor reviews. Really getting frustrated with nothing providing relief for very long, and so little that I can do.
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Old 10-06-2021, 01:22 PM #19
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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, didnít 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 #20
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Quote:
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, didnít 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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All the best, Marleen
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Work related (car) accident September 21, 1995, consequences:
- 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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