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 06-05-2013, 11:25 AM #1
Toby'smom Toby'smom is offline
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Default Do I have RSD?

I had a mastectomy with TRAM flap reconstruction 6 months ago and have been in pain since, but in the last month it has gotten much worse. I visited a Plastic Surgeon at the cancer center yesterday who diagnosed RSD. I have a lot of abdominal pain and swelling, and the skin on my abdomen is sensitive to touch - feels like a mild burning sensation or pulled muscle - but these are the only symptoms that seem to match RSD. I believe that the nerves cut by surgery are regenerating, and that the mesh implanted during surgery is causing the pain. The Plastic Surgeon mentioned more than once that she has done a lot of hand surgery, so she's seen RSD before, but I'm not sure I believe the diagnosis. She didn't ask a lot of questions, just ran her hands over my abdomen. Has anyone had a similar experience with RSD after this type of surgery?
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Old 06-08-2013, 06:29 AM #2
Ccm47 Ccm47 is offline
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I don't know much about RSD in the trunk, but what I've read says it is definitely more common in the extremities. But it seems to have a lot of facets that no one knows about. The good news is that if your plastic surgeon is astute and it actually is RSD, then maybe they can treat it early and put it in remission. (I was going to a podiatrist who didn't recognize my RSD for a year, and now looks like maybe that will cause me to be in pain the rest of my life????) Anyway, can you get a second opinion from a pain management md or a neurologist who has experience with RSD? That might ease your mind.
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Old 06-09-2013, 05:49 PM #3
Tashi Tashi is offline
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Quote:
Originally Posted by Toby'smom View Post
I had a mastectomy with TRAM flap reconstruction 6 months ago and have been in pain since, but in the last month it has gotten much worse. I visited a Plastic Surgeon at the cancer center yesterday who diagnosed RSD. I have a lot of abdominal pain and swelling, and the skin on my abdomen is sensitive to touch - feels like a mild burning sensation or pulled muscle - but these are the only symptoms that seem to match RSD. I believe that the nerves cut by surgery are regenerating, and that the mesh implanted during surgery is causing the pain. The Plastic Surgeon mentioned more than once that she has done a lot of hand surgery, so she's seen RSD before, but I'm not sure I believe the diagnosis. She didn't ask a lot of questions, just ran her hands over my abdomen. Has anyone had a similar experience with RSD after this type of surgery?
I agree with the first person who replied to your post. I would get to an anesthologist that practices pain relief, or an RSD Specialist.
I think the best RSD doctor is Dr Hashmi in Florida.
I have had RSD for a long time now. If I were newly diagnosed, I would get to Florida to see him. Not something to mess with, if at all possible.
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Old 06-14-2013, 11:13 PM #4
finz finz is offline
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I've heard of tons of docs who were not able to make a dx of RSD despite some fairly obvious symptomatology. I haven't heard of many at all who dx'd RSD when it didn't turn out to be the correct dx.

What does the plastic surgeon recommend that you do next to get treatment ASAP to nip this in the bud/try to achieve remission if it is in fact RSD ?
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Old 06-15-2013, 05:35 PM #5
KathyUK KathyUK is offline
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It certainly sounds like it to me. It can and does start in the trunk in many cases. Mine started in my lower back, buttocks, groin and bilaterally on my outer thighs, so didn't start in one limb. I wouldn't risk leaving it untreated if you're in the early stages as that's when you have the best chance of remission. I would seek out a trusted CRPS doc asap. xx
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