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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


[QUOTE=Michelle94;3830350]Roge35
Welcome to the boards.. I am so sorry you have to go through all of this.. We are all here for you at anytime...
I am so surprised that they want to give you a SCS already. That is fast.. And yes you are young. They do get better response from younger pts with RSD.. Usually its intense PT.. the right cocktail of meds..
I am just shocked.. I never had the SCS but That would probably be my last resort. Any type of invasive procedure should be the last resort..
Since you have had positive results from the block.. I think that would be my next choice.. Try to see if you can get another one..
Taking meds do stink.. I am about the same weight as you.. I don't tolerate it either very well. After being on them for some time.. My body has got use to them.. At first.. when I started the Neurontin.. I as so sick.. I couldn't eat for days.. Now I can't even tell I take them..
My opinion.. Try other options.. SCS should be last resort...and cause your so young.. I do feel PT should be in that option.. I worked for a drs office.. and we has several young pts who had rsd who went through intense PT. (five days/wk)... theirs did go into remission...
Good luck on your choices.. We are all here for you..
Michelle[/QUOTE]

Hi Michelle-
Thanks for your input. I have had 3 symp. blocks total now. They are wonderful, but provide only very temporary relief--complete relief for 8 hrs, then it flares again. The PM doc told me from the beginning he needed to be aggresive with my treatment because I am so young. They have seen the most success with young, early diagnosed, lower extremity involvement patients with a SCS. It is pretty much my last resort. I can't tolerate much in the way of meds and drive or work. I have seen 2 PM specialists in Columbus and they both agree on the plan of 2-4 injections prior to a SCS. I saw the ortho guy last week and he told me to have faith in my PM specialist--he is very smart and knows what he is doing. That came from the best ortho guy in Columbus. So, I am in with the right group. The last symp. block lasted about 7 hrs, and then I had a severe flare that night. It has been off and on since, but with the weather being warmer, my S/S are somewhat better. My foot is still mottled and burns like crazy at times, but not constantly. The PM doc wants a more LT solution, without doing blocks every week....which I agree, because I can't stand the blocks. After clearance from the psych eval.(which is a requirement by BWC for the SCS ), they will proceed with the SCS trial here in probably a couple weeks. If that works, then it will be permanently implanted. I feel better after talking with the ortho guy and other people. Like he said, I can either leave it alone and be miserable and take the chance of it spreading, or let the PM doc do the SCS and attempt to help relieve the pain and get back to a normal life---I risk it spreading either way. I think I read on a website that RSD spreads in like 80% of the population. I think RSD is so misunderstood by so many people....docs and physical therapists. You hear so many different versions of RSD and about it spreading or that it doesn't spread....it is just so misunderstood. It can spread, and it needs to be treated early. The earlier the better. So, I am keeping faith that this SCS will work, and I can get back to work and enjoying normal activities again. Thank you to all of you for your support. This is such a great website. For those that are going through a rough time, just know that there is a tomorrow. Hopefully, tomorrow will bring a better day. And, hopefully with this great technology we have these days, they will eventually find a cure for RSD!! Thanks again. Take care--Katie





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