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 01-11-2009, 12:34 AM #21
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Originally Posted by debbiehub View Post
I had a hip replacement after being dx with RSD and it was the biggest mistake i made- The rsd was only in my foot but now is spreading thru out my body. Stay away from surgery if possible

Deb
Deb, Thank you for your post. I am so very sorry for your RSD proliferation. My prior question was about, exactly your issues. I am so sorry that your experience had to occur, but at the same time, I am pre-2nd surgery looking for so many answers, so I am, in a very guilty way, eternally thankfull for your sharing your experience. I wish you the best!

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Old 01-12-2009, 12:16 PM #22
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Hi everyone,
I am new to this forum and I am looking for people to talk with about any surgery experience they have had since being diagnosed with RSD/CRPS. I am in a situation with a fractured sesamoid bone and was diagnosed with RSD/CRPS 4 months later. That was last year 7/2007 and my pain level is doing real well at this point. The surgery will be the only way for me to get my life back and to walking properly w/o a walking cast or these pads I need to put into my shoes to alleviate the pressure at the fracture site. But I am extremely terrified of the RSD/CRPS spreading and making my life worse than were I am at right now. The Drs. are willing but have suggested very strongly to not go through w/it. Any suggestions, help or experience would be greatly appreciated.
Thanks!!

Be careful about the sesmoidectomy as well, if that is what they are considering. I know of someone who had that same surgery and was far worse after it. Good luck!
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Old 01-12-2009, 07:30 PM #23
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Default Not recommended but

Surgery is not recommended for an RSD patient, and I believe surgery caused my spread. Now, having said that, I have to tell you I have had 2 major surgeries after Full body RSD and did not suffer any other consequences.
This has to be an informed decision between you and your doctor. Also, you also have to weigh the odds in your particular situation. This is a decision best made by you, your doctor and your family. Can you get HBOT (and of course blocks before and after) after surgery, is another question you might ask? Hugs and all the best to those who are in the situation. Diana
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Old 01-23-2009, 08:52 AM #24
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Thanks Karen,
Which doctor would be the one to decide about before and after treatments? Currently I am only seeing my family physician and the orthopaedic surgeon. My problem is that I have no insurance, did not qualify for medicaid because I have not been approved for disability ( 7 months wait here in VA) and now have no income. I had to reduce my existing resources to poverty level in order to qualify for Medicaid and then was denied. I am only having hip surgery because I qualified for Charity Care through the hospital. I still have to pay for surgeon, anaesthesiologist, and any other disciplines than are involved who bill separately from the hospital. Thankfully, my church family is supporting me quite a bit financially and in other ways. I don't know if the hospital's financial assitance program would pay for all of the before and after treatments you recommend. I think I will give your recommendations to my orthopaedic surgeon anyway and see what comes of it. I have my post-op appointment on Monday and surgery is scheduled the following Monday.

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Old 01-23-2009, 12:44 PM #25
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Hi there. I have to respectfully disagree with Diana on this point, if appropriate precations are taken. Please check out Mslday's response to a posting I put up the other day, regarding a very successful surgery she had last summer in Germany. (She's posted on it earlier.) The German doctor call it "peridural anesthesia for the lower limbs." Sadly, she says that in Germany, it's now regarded as the "gold standard" for treating new (accute) cases of CRPS. After being on this forum and it's predecessor for years, I can't tell you how much sorrow that fills me with, watching newly diagnosed patients or their parents doing everything in their power to find adequate treatment:

"For a GREAT article on the subject, written for the general reader, see, "The Painful Truth: The Iraq war is a new kind of hell, with more survivors - but more maimed, shattered limbs - than ever, a revolution in battlefield medicine is helping them conquer the pain," by Steve Silberman, Wired, Issue 13.02 - February 2005 http://www.wired.com/wired/archive/1...ain&topic_set= The story tells the tale about how one anesthesiologist from Walter Reed revolutionized the treatment of horrific battlefield injuries, all by pumping local anesthetics into the site of the wound. "
Hi Mike,

Great article. This is the same technique I was given following my surgery in Germany this past summer. I had the pump going continuously for 1 week. German doctors consider this the "gold standard" for treating newly diagnosed RSD cases and have been using it with great success for years (they call it a peridural anesthesia for the lower limbs). For the upper limbs my doctor said that they can access the nerves through a spot somewhere in the neck area. I'm happy to see that it is finally making its way to North American hospitals because it will make a huge difference.

MsL


In any event, the entire thread is at http://neurotalk.psychcentral.com/thread72276-2.html if you want to check out some of the other references I posted, basically the same stuff GalenaFaolan referred to in her post on this thread on November 10, 2008, which has apparently been overlooked.

Mike
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Old 01-23-2009, 01:51 PM #26
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Dear Michael,

On a serious note, does she have her life back. Or just the SX relieved????

Hugs, Roz
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Old 01-23-2009, 02:53 PM #27
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Dear Roz -

Unfortunately, this isn't a cure for CRPS unless given in the acute stage. (And the tragedy is that it's not being used in this country for that purpose, notwithstanding the fact that doctors usually have ample opportunity to do so.) What it is, however, is a pretty good way of preventing it from getting worse because of subsequent surgeries. So it's my understanding that the person in question, although not better, didn't see any aggrevation in her symptoms as a result of the surgery on what I believe was a CRPS affected extremity.

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Old 01-23-2009, 11:32 PM #28
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Further to Mikes comments I actually do have my life back, I was out shoveling snow and had no major problems. I'm not cured, but I am substantially better than I was before I had the surgery. It is believed that the screw that was placed between my 1st & 2nd metatarsal was the main cause of my RSD (why an orthopedic surgeon would place a screw in a foot like that is beyond most medical reasoning but that's another story). My body is still healing, recent x rays show osteoporosis is still evident in the area of trauma but my bones are strengthening and my RSD symptoms are very mild now.

Mike is right, sadly this treatment is not being offered to patients in the acute phases of RSD. My doctors in Germany were very surprised I had never been offered it here in Canada. When I explained this procedure to my PM Dr after I returned home, he replied defensively that he only has 4 bed for the whole of the province of BC. Honestly I think it is because he isn't familiar with the procedure. I am truly happy to see it being used for the injured soldiers, lets hope the knowledge gets transferred to other medical professionals so it can be used more widely. The anesthesiologist who gave me the continuous "peridural" block serves part time with the German Navy helping with the injured from Iraq. I was very happy to be in his expert hands.

MsL
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Old 01-24-2009, 08:14 PM #29
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Originally Posted by Mslday View Post
Further to Mikes comments I actually do have my life back, I was out shoveling snow and had no major problems. I'm not cured, but I am substantially better than I was before I had the surgery. It is believed that the screw that was placed between my 1st & 2nd metatarsal was the main cause of my RSD (why an orthopedic surgeon would place a screw in a foot like that is beyond most medical reasoning but that's another story). My body is still healing, recent x rays show osteoporosis is still evident in the area of trauma but my bones are strengthening and my RSD symptoms are very mild now.
MsL
I happily stand corrected! (And am thrilled to here of your continuing recovery. Clearly your RSD was being aggrevated by the screw. One wonders how many of us have such "reversable" conditions.)

Mike
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Old 02-03-2009, 02:50 PM #30
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Default peridual anesthesia

MSL,
May i ask you what is peridual anesthesia?
Would you please clarify?
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