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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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#1 | ||
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New Member
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Hello,
I just found this site researching information for my father. He was diagnosed with RSD approximately 8 years ago after a knee surgery. His orthopedic surgeon did not diagnose it right away and continued to operate on my father. Being that it was undiagnosed/untreated for so long, my father has not reacted positively to most of the treatments that he has received. In addition to that, he was recently diagnosed with Charcot's Foot. It is very common in diabetic patients; however, my father is not diabetic. Has anyone had this experience with Charcot's Foot with a diagnosis of RSD? Also, my father is having an operation to correct the Charcot's Foot and I am worried that the staff is not taking the correct precautions with the anesthesia. I have read that RSD patients need to have a continuous regional anesthesia of some sort before during and after surgery. I met with his orthopedic surgeon, who will be operating on his foot and he said that they will not be doing any type of special epidural at any time during the operation. He does not want my father to be numb until they know if the RSD has flared up. Then he said he would do something to treat it, like an epidural. This does not mesh with any of the research that I have read. Everything has stated that a continuous regional anesthesia is the best preventative measure for RSD flare-ups or spreading of the disease after an operation on someone who already has a RSD diagnosis. Any feedback would be appreciative. Once this new medical issue is under control and I am hoping that my father can resume treatment for his RSD. Thank you! mfrancis.palmer ![]() |
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#2 | |||
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Legendary
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Hi there mfrancis.palmer. I don't have RSD but I saw that this was your first post and I wanted to welcome you to NeuroTalk. Welcome!
![]() I hope some-one comes along soon with some answers to the questions that you pose, and hopefully give you some advice as well. ![]()
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Eastern Australian Daylight Savings Time and my temperature . |
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"Thanks for this!" says: | Dew58 (06-15-2009) |
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#3 | ||
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Junior Member
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Hi Mfrancis.Palmer
I don't know what country you live in but if I were you I'd either insist on a second opinion or refuse the surgery unless it is a life-threatening emergency. The protocols and guidance (such as it is) is clear about the risk of surgery in any patient with CRPS and the correct procedures to minimise it. Perhaps you might want to mention to the surgeon that you will regard his actions as gross negligence unless he follows the guidance for dense regional anaesthesia before, during and after surgery for adequate lengths of time. I suggest you photocopy and give the surgeon all of the relevant information you can find with the guidance in it - that way he can't claim ignorance either. The idea that the foot should not be numb until he sees if the CRPS flares up seems insane. Personally I don't think the surgery is worth the risk at least until you get a good quality second opinion from someone other than an orthpaedic surgeon. Get one from someone with a special interest and genuine knowledge about CRPS - say, a neurologist or pain management specialist. Ortho's thypically have no idea and no real interest in CRPS type issues - they just want to get on with the cutting, sawing and hammering!! |
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"Thanks for this!" says: | Dew58 (06-15-2009) |
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#4 | |||
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Co-Administrator
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I agree with gymjunkie's suggestions.
I've read about how blocks should be used for crps/rsd patients undergoing surgery and other invasive procedures over the yrs. I think a second or third opinion or a more knowledgeable surgeon ... is the way to go. It is not worth the risk of it spreading.
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Search the NeuroTalk forums - . |
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"Thanks for this!" says: | Dew58 (06-15-2009) |
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#5 | |||
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Magnate
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Hi,
First of all Welcome to Neurotalk - I am sorry to hear about everything that you have and are currently going through ![]() I have RSD in my left leg and right arm, I developed it when I was 12 years old after an ankle sprain - I am now 13. Since I have been diagnosed with RSD, I have had to have two seemingly "minor" procedures. The first procedure I had done was a nerve block and the second procedure was to have an ingrown toenail removed on my RSD foot. Unfortunately I suffered from complications from both of the Operations, when I had the nerve block, my PM Doctor injected directly into my leg which has RSD and I developed severe balance and co-ordination problems. It was only after I had the nerve block that my mum found an article on the internet stating that you should NEVER inject directly into an RSD limb unless you absolutely have to. From the block, I was left in a wheelchair for 13 months. I also developed complications from the Ingrown Toenail removal - the doctor that did the operation had to numb my big toe and unfortunately I developed really bad muscle spasms. I don't want to scare you in any way, I just want to make you aware of what happened to me. I totally agree with Gymjunkie - I was always told that you shouldn't have an operation unless you absolutely have to have it done. I have read quite a few articles that state that when doing surgery on an RSD patient, it is good to use a nerve block to stop any complications and any additional pain, although please make sure your doctor DOESN'T inject directly into your RSD limb!! I wish you the very best of luck with your upcoming surgery and hope that everything goes OK. You are in my thoughts Alison
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To the World you may be one person, but to one person, you may be the World. |
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#6 | |||
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Senior Member
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![]() Welcome mfrancis.palmer to NeuroTalk ... i see several have already started answering your questions ... there are lots of friendly, helpful, and supportive people here ... again ... welcome to NT
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. . chicago,il . |
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"Thanks for this!" says: | Dew58 (06-15-2009) |
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#7 | ||
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New Member
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Thank you to everyone who responded. I emailed the information to my parents, who then gave it to the orthepedic surgeon. He was very responsive to my concerns. He and I emailed a few times today, in addition to my father meeting with him today again. The surgery to correct the Charcot's Foot is tomorrow and we will keep our fingers crossed that the different types of anasthesia will keep the RSD away. I will keep you posted. I feel much better about the procedure now.
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#8 | ||
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New Member
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Quote:
just now ran across your post. I am an attorney and I have a client who has RSD in her shoulder. The shoulder is now "frozen" and the ortho wants to "unthaw" it via surgical intervention. I sent my client to a neurologist who is recommending a continuous block before, during and after the surgery. The ortho has never done this and says that such protocol is outdated and "not done anymore" (he has never done it). in your post you state: "Everything has stated that a continuous regional anesthesia is the best preventative measure for RSD flare-ups or spreading of the disease after an operation on someone who already has a RSD diagnosis." Would you (or anyone out there with knowledge of journal articles and the like) please share these with me? Thank you. jstanleylaw |
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"Thanks for this!" says: | Dew58 (06-15-2009) |
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#9 | |||
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Member
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![]() Nice to meet you ![]()
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. A Positive Attitude Will Assist Me Toward An Active Life, Once Again . WC Injury 03/24/07;Two Right Knee Surgeries on 5/22/07 and 01/16/08. Surgeons and Physical Therapists ignored my concerns of burning pain, swelling, and no improvement and getting worse. Diagnosed RSD/CRPS I/Sympathetically Mediated Pain Syndrome/Chronic Pain on 06/2008 by family doc;on 08/2008 and 12/2008 diagnosis confirmed by two WC PM Doctors: Both legs;hips; hands; and spine effected by this culprit. SSDI granted 01/2009. |
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#10 | ||
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Member
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I have one that deals with this but do not know how to up-load if some one emails I can send it to them I had 2 surgery's on each shoulder TOS surgerys that should of not been done and looking at getting 2 total replacements darvell@sympatioc.ca
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