Quote:
Originally Posted by Burnbabyburn
Hello
I have had RSD for 20 plus years. Yes, owch.  . I developed RSD originally from a MINOR surgery to L knee which left me permanently inflicted with RSD. Then in 2005 I had surgery on L arm/wrist which left me with full blown RSD in left arm despite a block pre op. Surgery is the direct cause, and so far, sole cause of my intense RSD. I now need a hip replacement on the R side, and am really really uncomfy having this done due to RSD. My previous surgeons, docs did not do what was medically necessary or prescribed or follow a decent protocol to help me avoid spread or as I call it NEW RSD since I feel the RSD in my arm was a new injury, not a spread. RSD is lurking all over my body just waiting to jump out at first cut, lol. 
I also have other medical issues which made surgery very difficult. I have to have the surgery. I am at the point of needing to schedule it but NEED a reputable surgical protocol I can give to anesthesiologist, surgeon, pain management team about pre, during and post op treatment to help prevent and God forbid, treat any new spread. I know many people have had surgery without spread or getting new RSD.
Please, please share with me what you and your docs, surgeons, pain management, anesth dept has done to help you for a major surgery. I live in an area with the best of hospitals and surgeons, very well known, yet I cant seem to get the care and help I need when it comes to RSD and surgery. I will not be able to physically handle another limb being taken over to this horrible beast. WHAT did you have done to help prevent RSD?
Epidural catheter?
IV?
Pre-emptive meds weeks before surgery?
Additional hospital stay for a day or so before surgery to get meds in you early and calm system?
IV lidocaine, Ketamine, etc?
Do you have something written down? How did you get insurance to approve it?
Thank you all so much. I never ever wanted to have surgery again, and I am facing this again with a lot of fear, trepidation and so far, lack of support from the medical world to help me stop the beast from being a bigger beast.
Soft hugs for all!!!! |
Hello,
I am so sorry for your long battle with RSD!!
Have you discussed this pending surgery with your PM doctor? He/She should be willing to work with your ortho doctor to ensure you are treated with the very best care all the way around. One thought comes to mind is your PM admitting you for pain management prior to your hip replacement, where by they could administer an epidural anesthesia at least 24 hours before your hip replacement. Then your PM doctor could explain to your care team (especially nurse manager & physical therapy team) the complexities related to overall care for those afflicted with RSD/CRPS. When you have your pre-op appointment with the anesthesiologist I would ask for them to consult directly with your PM doctor to ensure the utmost care is given to you. One thing I've learned is that many doctors/nurses do not respond to acronyms but, often if you say 'complex regional pain syndrome' rather than CRPS/RSD they will more likely recall previous experience or at the very least look it up on 'UpToDate' for medical professionals.
Being that my CRPS II originated during a complex hip procedure (Peracitabular Osteotomy for hip dysplasia & labral tear), I sympathize with your situation completely!! On a personal note - I would discuss in great detail the pre-cautions your ortho will take to protect your nerves during this operation. You mentioned the surgery is even more complicated for one reason or another.. this would in my opinion make it even more critical that you and your surgeon feel confident in the approach, implants etc., to reduce all risk for CRPS and just as important need for re-operation due to unrelated complications or early revision. Have you discussed prophylactic meds to prevent Heterotopic Ossification? This I would strongly suggest as it is a relatively high complication and could occur in the area of nerve bundles (as it did following my hip operation). Vitamin C, Vitamin D3, B6 & B12 daily prior to and following your operation would be one of my recommendations. Do you know which approach they are planning with your replacement?
Sorry for all the questions.. having already had 6 major hip operations with still bilateral hip replacements in my not so distant future - this really hits home!
Wishing you the very best!
Tessa