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 07-30-2015, 11:46 AM #1
goblue1998 goblue1998 is offline
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Default Budapest Criteria

For those of you who may have a more mild form of RSD/CRPS did any of your doctors actually perform the Budapest Criteria in their exam similiar to Dr. Norman Harden's YouTube Video. I have seen 6 doctors and some have mentioned it but non have actually done all the steps most just push on my foot and say oh you don't have it because I don't wince in pain. Which don't get me wrong I am thankful for.
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Old 07-30-2015, 01:37 PM #2
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Thanks Littlepaw. I am still debating my surgery for next week. One day I am a go, next I am no go.
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Old 07-30-2015, 04:21 PM #3
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Don't overthink it.

You seem concerned about whether this is CRPS or not and I don't know if that is even possible to know. Let's say for instance on a scale of 1-100 that a score of 50 means you have CRPS. So what about the people in the 45-49 range? I am not sure if having a label for your condition is going to help you make a decision. Even if it is CRPS that does not mean you shouldn't have surgery. Some of the articles that are recent advocate addressing pain contributors. I would take this CRPS, no CRPS out of the surgical equation. It is really subjective.

I am curious if something is preventing you from trusting your doctors who think the hardware or another issue is aggravating the nerve and causing this. Something like 70% of people who get hardware out because of pain say they would have the surgery again. If you think your doctors don't know what they are talking about you should see other doctors. If you just need more information you should see other doctors. You could find a doc who does scratch collapse and that would tell you if the nerve is entrapped or badly damaged. It may not necessarily tell you if you have a traction neuritis from scar.

If you just need more time to heal before deciding then take it. Dec. 2013 was a ways back but Heck I am one year since my last surgery, 16 months since my nerve repair and the surgeons all think I have another 6-12 months to go.

If you are really getting a strong gut feel "no" that you should not have surgery or don't want the risk then IMHO you should honor that regardless of what anybody says.

If you think the pain you have is totally livable without big regrets and you have more to lose than to gain by having surgery then IMHO you should honor that too. They cannot make it like it use to be, you may always have some level of deficit. From reading the My Story post it sounds like you have come a long way and a LOT of what you wrote did not sound out of bounds for normal ortho post-op reactions. ...Don't press on your hardware BTW and the cortisone shot site is acting normally...

If it is only anxiety talking, you either have to decide not to let it rule your decision making and go ahead or....delay until you feel more comfortable about deciding. Only you know if you are having anxiety for a good reason or if it is just anxiety.

one question...will taking the hardware out cause any weird mechanical changes? Or is the area stabilized and not needing it at all? That is something to consider too.
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"Thanks for this!" says:
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Old 07-30-2015, 04:45 PM #4
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I do trust the doctors, I am a worry by nature unfortunately. I am so concerned about the CRPS in case I do have it surgery would probably make it worse which of course I don't want. I do want to be pain free. I was talking about getting another opinion and as my mom and husband pointed out most likely it is not going to say anything different.

I like the new surgeon I have found very much, he is very cautious, caring, spends time and listens and has been in podiatry field for years and years. He also always wins an AZ Top Doc award that AZ offers consistently year after year. I am in good hands sure wish I new him 1.5 years ago for the first surgery.

Thanks again for all your advice and comments it is really appreciated.

Hope your treatments continue to go well.
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Old 07-30-2015, 05:52 PM #5
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You are welcome. I know how hard it is deciding what to do from surgical standpoint and I understand the fear of becoming worse. That's why we're here. to lend support. I just hope I'm not muddying the water!

It sounds like you have a good team! I am glad.

and thanks, I am doing good.

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