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 10-03-2011, 03:16 AM #21
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Mike,

I also still respond to steroid packs. I can get 3 or 4 really good days (when I'm at the highest dosages) so I use them as part of my bag of tricks for flares and travel. Is this another case of them only working for certain RSDers? Certain types or length of onset, etc.

I'm only able to do 3 cycles of steroids or so per year. I remember coming across something you wrote about a longer course of steroids and meant to do more research and then forgot all about it... Memory issues of course. If you have any new info on either the longer course or just using in the regular way, it would be appreciated. I'll do a search on your old post when I'm having a good day!



I didn't mean to imply anyone could undergo blocks to the same area for months or years on end. Even though I was getting relief, my doc said that scar tissue would build up after a short while. (Another reason to make sure you're getting the best block available, they aren't all equal IMHO...) I think I maybe had 4 with him, and since it was clearly only giving me short term relief he stopped. Perhaps even when responsive, after a certain period, remission is just not possible--hardwiring of the spine, etc. That being said, it seems unfair to not be given the chance for remission, even if the chance is slight, even if someone is 2 years post onset.
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Old 10-03-2011, 06:15 AM #22
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Wow...I don't know where to start, I think just giving you a BIG hug Mike. Thank you so much for all of your input and knowledge. I am super frustrated with just about everything having to do with my RSD right now. I am going to call my PM doc today and make an appt to see him and talk about not doing more blocks and changing my new ER type pain meds. The ER pain meds he just put me on are making my heart race and pretty much put me in a coma like state. So, along with the blocks not working I am also having major issues with my pain meds. Sheesh...but, I do have a wonderful support system (my husband, Lit Love, and my family.) Again, thank you so very much for taking so much time to help me and give me clear answers to all my questions. Really can't thank you enough for listening and giving me such fantastic input. Karen ps- I have had RSD for about 8 months. Did not get diagnosed until about 6-7 months in.
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Old 10-03-2011, 06:46 AM #23
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Originally Posted by LIT LOVE View Post
8 hours later all your relief was gone? It sounds more likely the anethesia finally wore off completely, rather than you having a positive response to the block and it wearing off that quickly!

I had my first set of blocks about 18 months or so after RSD onset at a pain clinic, and received short term (days to a few weeks.) There seemed to be no increase of efficacy from the series, and the last one seemed to have only a few days relief with only minor pain relief. I then had the RF procedure which made my RSD worse...so I was done with blocks at that point.

Probably around year 4 I had another series of stellate ganglion blocks, this time with a spine surgeon, but these were treated very differently. Instead of being knocked out, they were done while I was awake at a surgery center, so that he could pinpoint the area that gave me the greatest relief based upon my responses. It took several minutes and several trys to hit the "sweet spot". I believe he used a microscopic camera and monitor (sorry, my memory is fuzzy, but I remember a perisope thingy I think)... The results were actually better than my first round even though I was so far past onset. Again, all relief wore off after 2-3 weeks, and the staggered blocks didn't seem to extend or increase the results. Having an IV put into my "good" hand in the same place 2 weeks in a row caused mirroring and a horrific flair. Additional meds and Lidoderm patches got my hand back to "normal" within a few weeks luckily, but I've been terrified of needles ever since...

The last block I had was for my final wrist surgery about 5 1/2 years post RSD onset. It worked so well I thought the surgery had "fixed" me, but again it only lasted a few weeks. It was well worth doing since it made my recovery and pt a snap (post surgical pain is NOTHING compared to RSD pain) and it kept me from having a potential flare and/or spread.

The skills of the doc, tools used and block cocktail seemed to make a huge difference in my case. You might want to see if there are other RSD docs to try having a block (or series of blocks) with. Or maybe your doc would be willing to try it while you're awake... I'd research effective meds used for the blocks. It's been too long for me to remember, but I specifically asked for a few things, one of which he had already planned and another he had no issue with having the anesthesiologist add. You want to feel the relief while you're on the table to know it worked! The expense and difficulty of having these procedures, possibilty of causing spead, not to mention the importance of your window for remission, is too significant for hit or miss results.

I know this might be tough in TN, but you could see if your insurance would let you travel out of state if you can't find anyone else there... I'm sure your mother could babysit you, and if you could do it somewhere warm like FL, I might even be willing to come babysit you. Or if you want to try a doc in CA, I have a guest room ready for you. There is also the guy in Louiseville that does Ketamine, you could research his blocks procedure too. Condo rentals for a week or two can be quite cheap!

Had I undergone my series of blocks by a highly skilled doc early, MAYBE I would have gone into remission? Who knows. For those that are considering blocks 1 year or more after RSD onset, it can still be an important diagnostic tool, and it can give non-narcotic short term relief. And for anyone with RSD contemplating surgery, it seems like a must IMHO. Karen, at 6 months post RSD onset you really have a good chance of remission still.

Maybe you could research the percentages if rapid spread makes remission from blocks less likely before going through with the next one? Does your doc offer out patient Ketamine?
Hi L.L., have I told you I adore you recently? Karen
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Old 10-03-2011, 09:22 AM #24
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Were these just diagnostic blocks? They usually don't last long.
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Old 10-03-2011, 11:28 PM #25
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Dubious!


Now as to the small matter of closing an office, I couldn't agree more. It's like having to tie up decades of loose ends in a matter of a few months. Not for the faint of heart. (So I guess this explains where you've been for the last few months. . . .)

Mike
You are spot on! I couldn't agree more. It was much easier to start the business 23 years ago than to end it....
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Old 10-04-2011, 08:33 AM #26
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Sometimes, depending on what was in the injection, it can take 3-5 days for you to feel the full effect. Some have lidocaine which you would notice right away, and depo-medrol which would take longer for you to notice the results. I am always told to go home and put the heating pad on my injection site, and not do any thing strenuous for 36 hrs or so.

Hope you are feeling better.
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