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 05-31-2009, 09:36 PM #1
kilikina kilikina is offline
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Angry yes, you have RSD no, you don't

Going a little crazy here. Saw a new neoruologist this week. I was originally diagnosed with RSD in my right hand/wrist in April 2005. My neuro doc at that time has since left the area, hence the need for a new doc. In June 2006was diagnosed with RSD spread to right ankle and foot.
New doc took a lenghty verbal history and then did a physical exam. When he cam back he sat down and proceeded to tell me that although it's splitting hairs I "don't have RSD in my hand but neuropathy. But RSD is neuorpathy". I do however definitely have RSD in my foot. He now feels that my radial nerve is compromised and wants to do a new EMG. Treatment for the RSD vs. neuropathy is the same. Feels nerve could be "fixed" with surgery provided it is compromised.
How do I go from having RSD in my hand, have it spread to my foot, to not having it in my hand but in my foot?!? What should I do? the thought of an EMG is very stressful. Due to osteomyelitis I will have to have surgery on my hand. So adding more for a nerve problem isn't killing me more than the thought of more surgery. Since treatment is the same do I stick with what I know and scrap the EMG. Do I find a new doc? AAAGGGHHH!
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Old 06-01-2009, 12:01 AM #2
AintSoBad AintSoBad is offline
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Kilkina,
Whoa!
Hold up on that car wash!
(seriously, the surgery). Don't.
If you're not fully diagnosed, don't have ANY surgery (Unless an a emergency of course) and, if you do have Any surgery, there are specific guidelines that you need to have to have your docs, follow!

You're kind of new here (so too am I), but, get lots of opinions, and not just from us, we're not doctors, but, perhaps from other doctors who are familiar with RSD!

Please,
ASK FOR HELP!!

Pete
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Old 06-01-2009, 03:59 AM #3
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I'd get a new doctor.......STAT !

Neuropathy by definition means nerve damage.....as in cannot be fixed.

I guess it's possible that you have a nerve entrapment syndrome in your hand. A medial nerve entrapment is called carpel tunnel (usually affects thumb and index and middle fingers). A radial entrapement affects the ring finger and pinky. Pain, numbness and tingling would be symptoms, but not the red shiny skin and sweating that is typical with RSD. Either way, you would not call nerve entrapment or RSD .....neuropathy !

If it is a nerve entrapment.....that could be a good thing in that maybe surgery would fix that for you. I would not be having that surgery done by anyone who can't get the terms straight !
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Old 06-01-2009, 08:01 AM #4
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Confused

trying to get out all the info when the brain is scrambled.....the surgery I have to have is not for the "nerve impingement". Way back when I had the trapezium bone removed in my hand and a spacer put in. When I got the osteomyelitis it caused the spacer to "disappear" and the bones to shift. My thumb now looks like it starts towards the middle of my hand. If I don't have the surgery to put everything back in place I will lose all function of my thumb. The surgeon is not the new neuro doc I saw. Believe me I am not rushing into this and have gotten second opinions. Thanks for the advice so far.

Last edited by kilikina; 06-01-2009 at 08:04 AM. Reason: left out words
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Old 06-01-2009, 04:14 PM #5
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Kilikina,
You'd be a fine candidate for the "Hand Center" @ Jefferson, in Philly.
I wouldn't let anyone else touch my Shoulder to my hands.

I have carpel tunnel, ulnar nerve and TOS.
I still won't opt for an operation, but, if I were to,
This is where I'd surely go.
Check them out on the web...

(I've known people who would have surely "Lost their hands" in accidents at work, etc.
And they were "saved" by the doctors there.

Pete
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Old 06-01-2009, 04:42 PM #6
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Quote:
Originally Posted by kilikina View Post
trying to get out all the info when the brain is scrambled.....the surgery I have to have is not for the "nerve impingement". Way back when I had the trapezium bone removed in my hand and a spacer put in. When I got the osteomyelitis it caused the spacer to "disappear" and the bones to shift. My thumb now looks like it starts towards the middle of my hand. If I don't have the surgery to put everything back in place I will lose all function of my thumb. The surgeon is not the new neuro doc I saw. Believe me I am not rushing into this and have gotten second opinions. Thanks for the advice so far.
**********************************************

I got that.

I meant if you do have a nerve impingement problem, maybe a future surgery could help that. That would be a better prognosis than having RSD in your hand. That could be good news, but I wouldn't take the word of this new neurologist, because what he has told you so far makes no sense
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Old 06-02-2009, 08:28 AM #7
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I'd certainly go for a second opinion on that hand, esp. since they suggested surgery, which is a big no-no for RSD. Better be sure before surgery than after. Take it from someone who had all the signs and symptoms of RSD but who wasn't diagnosed before laparoscopic kneesurgery... I was diagnosed about a year after. My leg went totally purpleish/greyish/black after surgery, depending on how long I was held upright. All they could do was order me to "go back to bed". It didn't bode well for the RSD, on the contrary...

So be sure before you let them do surgery.
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Work related (car) accident September 21, 1995, consequences:
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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 06-02-2009, 09:31 AM #8
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like everyone else said get a new doctor and as fast as you can . and no surgery .. my rule on surgery if i will die if i dont have to have it then i dont need.. but i have been in this boat of you do and dont crap .. hang in there

carrie
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Old 06-02-2009, 01:33 PM #9
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Quote:
Originally Posted by CRPSbe View Post
I'd certainly go for a second opinion on that hand, esp. since they suggested surgery, which is a big no-no for RSD. Better be sure before surgery than after. Take it from someone who had all the signs and symptoms of RSD but who wasn't diagnosed before laparoscopic kneesurgery... I was diagnosed about a year after. My leg went totally purpleish/greyish/black after surgery, depending on how long I was held upright. All they could do was order me to "go back to bed". It didn't bode well for the RSD, on the contrary...

So be sure before you let them do surgery.
I am well aware of the surgery with RSD is a no-no. I had 2 possibly 3 unnecessary surgeries before I was accurately diagnosed. Dx. took 2 1/2 years after my first and triggering surgery. I am in a damned if i do , damned if I don't position with my thumb. I can't afford to lose total use it.
I saw my PM doc today, and told her of my visit to the new neuro doc. Her immediate response was change doctors. I have an appointment with a new "new" neurologist. Will keep you all posted. Thanks again for everyone's responses and support.
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