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 03-14-2007, 04:40 PM #1
used to be used to be is offline
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Thanks to all for the warm welcome and encouraging words. I have a question I would like to ask you. I've been told that the only option left to me if I have any hope of returning to a normal life is to have a chemical or surgical sympathectomy. Without it I am sentencing myself to life with severely limited mobility. I 've researched this on the various websites. Some doctors are vehemently opposed to this as they feel the rsd will come back with a vengeance....others feel it's the only way to go when all else has failed. Ninety percent of me is saying not to do it.But, there is that ten percent that wants to walk so bad that I'm willing to do anything. Any ones experience with this or opinions on this would be appreciated. Hope you all had a good day......Used To Be
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Old 03-14-2007, 06:35 PM #2
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Default Hi Use to Be,

I can't tell you what to do on that but I will say that not many Drs. will even do the sympathethemy. There is one girl on the Thoracic Outlet Forum that had one, I'm thinking her name is Beth but she has started coming back on there you might want to go to the TOS forum also and ask for her and get her input on it.

Every Dr. I have seen and there has been too many to count says it is a definate no. I am amazed actually that there are Drs. out there still wanting to do them. It makes you wonder how much money is involved in their thinking.

There will be others that will come and give you some thought on this. Do a lot of research and do get other opinions from other Drs. Also see if you might find other things to help with the RSD.

I always mention blocks. I don't remember if you have had any and I do know they don't help everyone but I believe in them.

I feel bad for any of you that are dealing with the RSDS at it's worse. Today the weather was cold and I have been taking extra Methadone.

I hope you start seeing some better days.

Ada
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Old 03-14-2007, 07:46 PM #3
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I, personally, would not reccomend going through with this procedure. If it is done and is unsuccessful, having nerve blocks will not work anymore because the nerve was removed. It is too risky of a chance to take, but that is just what I think. I'm not much of a risk taker. My doctors say that physical and occupational therapy is the only thing that can help to reverse it or atleast prevent the RSD from getting any worse. So far, the therapy is working for me. I am able to walk now after almost a year of having RSD.

Best of luck to you
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Old 03-15-2007, 07:02 AM #4
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Default Hi Use to be,

I wanted to let you know that I was wrong on the name of the girl that had the sympathectomy on the TOS forum. She goes by Jensrib. Please go over and PM her and she might be able to give you some info on how things are afterward with the sympathectomy.

Ada
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Old 03-15-2007, 09:08 AM #5
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those are considered ... not .... the way to go anymore. and in fact they are thought to make things worse. i would never do it. i would get another opinion from a different place. are you near any major hospitals? it sounds like yoy need a moe up to date doctor.
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Old 03-15-2007, 12:19 PM #6
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Used to be,

I had a radio frequency sympathectomy about 5 or 6 years ago and the only thing it did for me besides cause extreme pain during the procedure was decrease the edema in my right leg. IMHO, If I were you I would think long and hard before I had this procedure done, if at all.

Ada, hope you are felling better.

Nikmcjo, The type of sympathectomy I had did not remove the nerve, just burned it apart. Actually even though they contain a portion of the word ectomy, meaning removal, the nerve is either cut or burned any of the procedures. Also I have had numerous blocks since my RFS.

Joan, I wouldn't suggest anyone have any of these procedures done.

Hope I gave you something to think about.

God Bless
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Knowledge is power!

RSD since 1999 right foot and ankle from fracture of 2 bones, after stepping in a hole at an apartment complex while visiting a hospice patient. Again hunting for a new PMD.
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Old 03-15-2007, 08:13 PM #7
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One of my first docs suggested it but at the time I thought I could live a normal life with the problem and didn't do it. Another doc told me later that they are rarely successful and just exascerbate the problem after giving you six months to a year of normality.
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Old 03-17-2007, 08:14 AM #8
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I had HBOT with someone who had a sympathectomy and it didn't help her at all - only made things worse.

I had thought they were the "old fashioned" treatment for RSD back in 2001. It's 6 yrs later now and I'm shocked to hear that someone is out there recommending such an "antique" treatment.

I would recommend a big - STAY AWAY from it and find yourself a new doctor that is using the most recent treatments(for example, ketamine).

Also beware of invasive treatments.

that's my 2 cents.
Peace and hope,
Lisa
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