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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 04-09-2012, 03:07 AM   #1
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Oops! *28 y/o RSD(DDD/FBS) -> ?SNS?

OOPS!! This originally posted with the subject: "8 y/o DDD/RSD -> SNS?" ~ prob a cut/paste error on my part or something similar...

. . . Again, now, with my hard-earned 20-years attached:

Hi. I'm new to the forum. I don't normally reach out like this, but like most others I've found myself less and less able to tap into my resiliency after each flare up.

I'll just jump right in and explain what's going in. Approximately 6-7 months ago I had a SNS trial and after 3-4 days of that in place, once it was removed, the stimulator had seemed to "reset my nerves." It was both inspiring and for a longtime sufferer ominous in a way that felt 'too good to be true.' I took whatever I had, though, looking no gift horse in the mouth. I opted to not have the permanent implant put in because I was well-managing my original DDD; in fact, better than even before the RSD sx had come on.

Now, 6-7 months later, I'm making appts with my pain mgmt physician neurosurgeon to discuss the permanent implant. My pain mgmt physician flat asked me why I forewent the implant 6 months ago because, after all, I know my DDD has been progressively worsening the last 7+ years. I explained that my NSurg'n told me & I agreed during the appt that we wanted to save what few option we had left for my later years... but reading the notes he received of the appt, he didn't get the same impression. He even read them aloud. I agreed, they didn't seem to explain specifically why not.

Oh, yes... I should mention... I'm 28 now, this started when I was 20 years old. I had an L5-S1 microdiscectomy at 23 that left quite a lot of scar tissue and complicated my nerve impingement further. The time between the microdisc & the scar tissue taking hold, however, was fantastic! I had forgotten what life was like with no-to-little pain. It was because of that time that I was able to enroll and complete my BSN, RN.
I have a hard-head and driven spirit. I live by the # of my age and not by how I feel, as most others do, because otherwise I'd be in line at the Medicare office with my MawMaw. I'm asked at least every other time I'm at my pain mgmt Dr's office if I'm there to pick someone up by another person near my age in the waiting area. I remind myself constantly I'm in my 20's and commit to living like a person in their 20's (within reason and responsibility).

So, now that the RSD sx have returned my pain mgmt physician says simply: SNS. I originally wanted to reach out to ask if TexMexLex still posted/read the forum - bc I read her posts and she was near my same age looking at a similar scenario. I would love to hear what choice she made and how things have progressed for her.

If any of you have similar stories or can help through your own experiences, I more than welcome it and appreciate it so very much.

Thank You.
Natti

 
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