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 10-22-2012, 02:01 PM #1
busymom1967 busymom1967 is offline
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Default What type of doc made diagnosis?

For those with a formal diagnosis, what type of doctor finally made the determination? What tests were done?
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Old 10-22-2012, 03:03 PM #2
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Default Hi Busymom

I went to an orthopedic surgeon, to inquire about fixing my ankle. After discribing what I was feeling, he said I have some kind of RSD or PN in the ankle, foot and calf...no surgery. It was later confirmed by a physiatrist, a pain specialist who treats at a cellular level. I had no test to confirm it, as I already have medicare. I don't know if having a formal test would be worth it to me, just to confirm what two doctors suspect. I am not sure how other people discover it, or have it confirmed. I know that to get some insurances you have to do some tests. ginnie
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Old 10-22-2012, 05:27 PM #3
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Ginnie was a little luckier than I was, but I was still caught relatively early: at least by the standards of 2001. I started having exceptional pain while my ankle was cast, while my ortho had the sense to refer me to a kindly old gent who was considered a founder of pain medicine, he didn't have the sense to tell them to immediately get me out of the cast, but instead doubled my dose of Vioxx to 50 mg/day. It was only a couple of months later, when my internist - looking for an answer - sent me to a rheumatologist, who ran his battery of blood tests, all of which were normal, but who then sat me down and gave me the tentative Dx of RSD.

The old pain doc saw me a couple of days later and I got my first LSB under fluoroscopy, with no change of any kind. He repeated it a week later, but the second time did it bi-laterally, and WHAM: 10 days remission! That, of course, was the "good news" . . .
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Old 10-22-2012, 07:48 PM #4
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I was finally diagnosed by pain management doctor after a "successful" nerve block. Last under a day..

I had gone through- three ortho docs, a neuro, gp, pt. before hand.

I had pain starting after break last august. Casted, was "healed" so he let me go. Always had pain. Come February i had been dispatching for a couple months and couldn't take the pain any more. So went back to doc, he said i had dequervains, did surgery (wich he only made my tendon pop in an out now too) made is 50 billion times worse. He said pain was normal post op. sent me to pt. 6 weeks later still awful, transferred me, and then i kept getting passed to someone else (each saying it might be rsd) . so i decided to go to pm on my own, and he scheduled the block, and bam diagnoses. Now have a new pm/neuro doc, who also agrees.


So..thats my experiance with dx
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Old 10-22-2012, 07:51 PM #5
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Is a block necessary for diagnosis? Sounds very scary to me, especially to put a child through. Thanks for sharing your experiences.
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Old 10-22-2012, 08:34 PM #6
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Quote:
Originally Posted by RSDcandice View Post
I was finally diagnosed by pain management doctor after a "successful" nerve block. Last under a day..

I had gone through- three ortho docs, a neuro, gp, pt. before hand.

I had pain starting after break last august. Casted, was "healed" so he let me go. Always had pain. Come February i had been dispatching for a couple months and couldn't take the pain any more. So went back to doc, he said i had dequervains, did surgery (wich he only made my tendon pop in an out now too) made is 50 billion times worse. He said pain was normal post op. sent me to pt. 6 weeks later still awful, transferred me, and then i kept getting passed to someone else (each saying it might be rsd) . so i decided to go to pm on my own, and he scheduled the block, and bam diagnoses. Now have a new pm/neuro doc, who also agrees.


So..thats my experiance with dx
Sooooo similar! Now I have this hideous dequervains scar. Ugh.

I was seeing a wc dr, he sent me to an ortho, ortho did the DQ surgery and lots of PT, didn't help, changed drs, he did a EMG with a neuro, still no diagnosis. Then I started with a new primary dr for wc and she immediately said, "I think you have CRPS." She sent me to a PM, Neuro, and Ortho, all three said "probable" and scheduled me for a Stellate Ganglion block, emg, and bone test - after the block my diagnosis was changed to "CRPS of the right upper extremity." Dr. Prager was asked to confirm, he did a block, and my diagnosis was confirmed.
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Old 10-22-2012, 08:36 PM #7
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Originally Posted by busymom1967 View Post
Is a block necessary for diagnosis? Sounds very scary to me, especially to put a child through. Thanks for sharing your experiences.
I have had 4 blocks...the first three were with some kind of meds that made me loopy, didn't hurt at all. My 4th block was done by Dr. Joshua Prager and he doesn't believe in any anesthetic for Stellate Ganglion Blocks, so done under fluoroscopy, I had a block by him, and it was fine, it pinched for like a second. It was a better block than the ones done under anesthetic too. Getting the IV was the most painful part of any of them.
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Old 10-22-2012, 08:51 PM #8
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one look by stand in Head Therapist after 2 months unfortunately she then put me on 2 of the worst possible treatments so when I finally got to see a specialist 10 months later he said they had caused so much damage and delay there was no hope of remission
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Old 10-22-2012, 10:34 PM #9
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Was seeing an ortho doc who sent me to foot/ankle surgeon for possible repair. The foot/ankle surgeon suspected crps and sent me to a PM. PM did 2 LSB with very, very limited success. He wasn't convinced that I had crps because "everyone he saw with crps had allodynia". Sent me to a neurologist who examined me and said, yes, crps. Went to a new PM who did a biopsy (didn't want the EMG). Biopsy was positive for crps and the rest is history.
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Old 10-23-2012, 11:26 AM #10
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Quote:
Originally Posted by fmichael View Post
Ginnie was a little luckier than I was, but I was still caught relatively early: at least by the standards of 2001. I started having exceptional pain while my ankle was cast, while my ortho had the sense to refer me to a kindly old gent who was considered a founder of pain medicine, he didn't have the sense to tell them to immediately get me out of the cast, but instead doubled my dose of Vioxx to 50 mg/day. It was only a couple of months later, when my internist - looking for an answer - sent me to a rheumatologist, who ran his battery of blood tests, all of which were normal, but who then sat me down and gave me the tentative Dx of RSD.

The old pain doc saw me a couple of days later and I got my first LSB under fluoroscopy, with no change of any kind. He repeated it a week later, but the second time did it bi-laterally, and WHAM: 10 days remission! That, of course, was the "good news" . . .
Quote:
Originally Posted by fmichael View Post
Ginnie was a little luckier than I was, but I was still caught relatively early: at least by the standards of 2001. I started having exceptional pain while my ankle was cast, while my ortho had the sense to refer me to a kindly old gent who was considered a founder of pain medicine, he didn't have the sense to tell them to immediately get me out of the cast, but instead doubled my dose of Vioxx to 50 mg/day. It was only a couple of months later, when my internist - looking for an answer - sent me to a rheumatologist, who ran his battery of blood tests, all of which were normal, but who then sat me down and gave me the tentative Dx of RSD.

The old pain doc saw me a couple of days later and I got my first LSB under fluoroscopy, with no change of any kind. He repeated it a week later, but the second time did it bi-laterally, and WHAM: 10 days remission! That, of course, was the "good news" . . .
"Good news"...oh my. I've read some of your posts and I can see you've been through so much. You are an inspiration and a good role model.

I had a contusion on my shin after having a varicose vein removed from my right calf just over 2 mos. ago. I was put under general anesthesia for the surgery so I wonder what happened. Surgeon says "I have no idea..you were placed on your back, just like the 700 other procedures like this I've done, and your shin was never touched." I'll never know I guess. Something "touched" it to say the least. The surgical areas healed nicely but the shin/leg pain persists and is getting more severe and spreading up and down my leg (knee is now stiff).

I was referred to a pain management practice that's literally in the same building and under the same company as the surgeon's practice. 1st visit there I was told by a physician's assistant that I likely had rsd/crps just going off of the symptoms and answering her questions. So, the next week I had 3 lumbar sympathetic blocks. With all 3 of them, I experienced warmth and pain relief for several hours. They had me see a pain specialist physician who then informed me that since the blocks were "unsuccessful", I don't have rsd/crps. I don't want to have it...who does? But I read that unsuccessful LSBs don't mean that one doesn't have rsd/crps. My diagnosis is now simply "pain". Seriously. I have most of the common rsd/crps symptoms unfortunately. The pain is so bad and this pain specialist is taking me off of low dose narcotics all together. Neurontin and Lyrica both left me with horrid side effects and I can't take them. I'm just wondering if blocks that reveal that pain is sympathetically independent vs. sympathetically mediated are an automatic reason to rule out rsd/crps?

Thanks fmichael and to all of you.
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