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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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03-06-2010, 02:02 AM
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Hi everyone!
I finally was seen at John's Hopkins Univeristy yesterday. YAY! They want to install a SCS next month and also want me to be a "trial" patient for them! Want me to be their example of what does and does not work for RSD. I was very happy to know that all of my doctors are experts on our condition. I was taken very care of and treated with utmost respect. It was tremendous! I now have a new respect for doctors who actually research different conditions and seek the best treatment for their patients. Just incredible! I am still a bit leery on the legality of it all. They will compensate me. Which I don't worry about (I would rather do it to help someone), I know it will be public. (No problem). No meds will be given. Still; there is a nagging doubt. I think fmichael would really help me with this! Hope all goes well! Kim 
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| "Thanks for this!" says: | SandyS (03-06-2010) |
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03-06-2010, 08:27 AM
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It is wonderful that you are working with J. Hopkins I here they are one, if not the best PM Dept in the country, but please read all you can on the SCS Device. I do not have one but I have read and heard not the greatest things about them. Just be carefull.
I have RSD for 6 years and have done it all but the SCS, stellate blocks,epiduarls, freezing of certain nerve,medications of all kinds, 3 - 5 day in-patient ketamine procedures, I have seen Dr. S. on many occassions, and I work with the Hospital for Special Surgery another great facility. There is a world of info. on the net just google SCS. Good Luck and I wish you the best..... Gabbycakes Quote:
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| "Thanks for this!" says: | Kakimbo (03-06-2010) |
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03-06-2010, 09:26 AM
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I could understand why they might want to do a study on you on what does and doesn't work but as many people who have had the SCS already put in, they are bound to have a percentage rate of how many don't do the job. I would say the don't do's are higher.
I know I went through the VNS trial and it's now out so I can't say anything about anyone who wants to go down the SCS path but I think the desperation we have to get out of pain or depression or whatever we are dealing with makes us accept what the Drs. want to do to us more readily. Please read up on the SCS. It seems to cause spread more often then notl I have heard J Hopkins is one of the best. When it comes to study hospitals, I have long learned I won't be their guiena pig. I went through that at the U. of CO. Good Luck, Ada |
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| "Thanks for this!" says: | Kakimbo (03-06-2010) |
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03-06-2010, 09:42 AM
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Kim,
Is this the facility in Baltimore? My friend just came back from their pain center treatment program (which is in the psychiatric part of the hospital-note sue why) and had good results. They helped thru changes in medication and some manual type therapys. |
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| "Thanks for this!" says: | Kakimbo (03-06-2010) |
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03-06-2010, 10:36 AM
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kim, If you don't mind me asking, Hopkins is a large facility and some departments overlap. Can you tell me what department is treating you? I know there is a pain center at Hopkins named after and donated by a particular family and was wondering if it is this facility. My wife and I did visit this facility several years ago.
Thanks, jm |
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| "Thanks for this!" says: | Kakimbo (03-06-2010) |
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03-06-2010, 11:16 AM
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Hi Jim.
Yes, in Baltimore (I commented earlier to you that I live on the Eastern Shore. A tiny little town near Chestertown, MD) I LOVE IT! The pain center is called Blaustein Pain Treatment Center. And yes, donated by their family.
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03-06-2010, 05:26 PM
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im extremely happy for you. But want to caution you. Definatelydo researchon scs. Theres no need to hurt or spread worse than normal.. Please be careful.. And most of all good luck!!! hope it works out for the best for you...
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Barbara |
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| "Thanks for this!" says: | Kakimbo (03-06-2010) |
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03-06-2010, 09:04 PM
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Good Luck!!!
I have SCS for almost 2 years. Your can go to the new forun on SCS and pain pumps for personal stories -mine too. It still amazes me how many people are down on SCS and do not have one -Oh well-You will make the correct decision-Fondly-Carol |
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| "Thanks for this!" says: | Kakimbo (03-06-2010) |
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03-06-2010, 09:32 PM
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| "Thanks for this!" says: | Kakimbo (03-06-2010) |
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03-07-2010, 12:15 AM
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Kim
IM glad to see you getting relief,,God is with you,,,,,praise his name kim,he has heard your cry and has answered your prayers,,,,Im so happy for you |
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