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RSD spreading very fast. Having 2nd nerve block today, i am scared.
I am really freaking out because my RSD is spreading like wildfire and I have my 2nd sympathetic nerve block today for my right foot. Has anyone ever asked or is it even possible to do two blocks in one day? One for my foot and one for one of my hands? I have the feeling my PM doc will look at me like "Are you nuts?!" And...well...at this point I am feeling pretty darn nuts if you ask me. Has anyone else had their RSD spread at a freakishly fast pace? How do I approach my PM doc with my question and concerns? I don't want to seem too insane, but the pain in so many new areas is making me feel looney-tunes. :( Karen
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Karen,
Don't feel like looney-tunes. The rate that RSD spreads is different for many. I am really sorry you're going through this but I just wanted to tell you that requesting two nerve blocks in the same day isn't strange. I had three done once. All in single nerves lines in the ganglion of my left side. So if that's what you need, that's what you get... |
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Karen,
When you flip I'm there to catch.........lol I'm off to my PT appointment so let me know how it goes.... |
Hi Karen,
No you are not looney tunes for wanting to be proactive with your body! Some docs just get nervous when their patients question things (which everyone should)esp people with rsd as we have to go through the pain...not them. My dear friend my rsd started in my right foot too (see we can have sympathy for each other now). Unfortunately, my rsd spread from there, mirrored to left foot/leg within a month and I had full body and bedridden all within four months!! My entire body and internal organs began shutting down. It was quite a mess...all when I was learning about rsd. I read postings here where people say they have rsd in only one part of their body for several years and I just shake my head because mine spread like you said wildfire. It only goes full-body in about 7% of all cases...and for me to be diagnosed within 10 days of it happening was a miracle too. As some people go years without a diagnosis. I had sets of three nerve blocks (for a total of 8 of them) and had worsening after each one. The first one was the best (not) the pm doc never gave me any novacaine or meds to block the pain BEFORE he inserted each of the three injections. With each one I felt the pain shoot down my back into my leg and foot. It felt like I was on fire from the inside. Horrible experience and I about cried from the pain. I never had anything to compare it with and had I known he would do that I would not have let him do so. The next set...I made sure I had valium. Live and learn. Tell your doc you belong to an rsd chat board and feel concerned about whatever it is that is bothering you and you want to speak to him about it. He should be able to put your mind at ease...if not then go get another doctor. Talk to family and friends and get a referral to a good doctor. Some docs have real bad bedside manners. Relax and be positive going through the process. If it doesn't work then you will find something else. Hang in there and let us know how you make out. kathy d |
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Karen,
I am so sorry for the fact that your going through this. I just got on. How did your shot/shots go? :confused: |
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Karen,
Sorry you had such an issue. I had that and during the procedure I asked for more versed, sorry but I am all about the meds when something hurts. There is no need to make a person suffer when there is all these meds to help. Back pain is normal. Mine still hurts from time to time, but I think it is because of my bad limp, cause every step I take hurts, I sleep most of the time now in the recliner, and the shots. When they did the trial stimulation my back hurt so bad I didn't sleep and had to take prn pain meds. It took me 2 days before I could even start playing with the stimulator to see if it would help. It didn't. Hopefully tommorrow, which is now today will be better. lol you get my drift. If I go to sleep, I'll say a prayer for you. :hug: Quote:
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Karen,
I just got on too and I am so sorry to read about your doc visit. I'm having a bit of trouble this morning too. I don't do well in chilly weather. Is it cool where you're at? The cooler air can't be good. Did the block do anything lasting for your foot? I was hoping for you that the doc would be able to succeed in doing both blocks for you and you have relief... |
Hi Anita and Jimbo, I am feeling pretty down right now. The symp. nerve block did not work for as long as the one I had two weeks ago. Thlast time I was pain free in my right foot for about 24 hours. This block (also for my right foot) only gave me pain relief for about 8-10 hours. Isn't it suppost to work the other way around? I am also on new ER type pain meds that make my heart race and give me a mild headache. Sheesh...I am in full whiner mode this mornin' folks. Sorry 'bout that...:( any advice on what body part to have my next block on?? It is in another 2 weeks and I think my PM doc wants to do my right foot again. I'm not sure i want that. I want to start doing them for my hands. What has been your response from your PM docs when YOU suggest the course of treament? Any and all advice is sure welcome. Thanks you guys. BIG *hugs* Karen
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Karen,
I'm so sorry it didn't work for you. I think it's suppose to get longer releif each time although my neurologist stopped after the first series in my neck didn't last. If you have a request for a certain treatment I believe the doc has to at least talk about it. The only thing I have to go by is when I speak to my neurologist about certain areas or symptoms she listens and examines that area but so far I've followed all of her advice. Being that it's our bodies, I would imagine that we should have the last say in what goes on. Maybe after you tell your doc the block didn't work he/she will be willing to try the other area. Remember the headaches I was getting in the middle of my brain? The Nortriptyline seems to be helping... |
Dear Karen -
Sorry for getting in late here, but how long has it been since you have first had onset of RSD/CRPS symptoms? The reason I ask is because it's pretty well established that they loose their usefulness the farther out you go. Check out the following piece, written for patients, on the always useful site of the RSDSA: Clinical Q & A: Can there be too many sympathetic nerve blocks for the treatment of CPRS?http://www.rsds.org/publications/Ack...inter2008.html For Dr. Ackerman’s more technical analysis, see, Ackerman WE, Zhang JM, Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome, South Med J. 2006 Oct;99(10):1084-8, FULL ONLINE TEXT @ http://www.rsds.org/pdfsall/Ackerman...lion_block.pdf: Abstracthttp://www.ncbi.nlm.nih.gov/pubmed/17100029 I hope this information is useful. Mike |
I am wondering is that the reason my dd pain mangement doctor had not yet agree to do the nerve blocks because her rsd been over 2 years.?
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Dear Karen -
I'm writing as a follow up to the post I put up earlier this afternoon, because I know that it's possible that the information I provided could be more unsettling than not. But, it's been my experience that confusion and mixed messages in the end just fan the flames of fear. And the most terrifying aspect of any experience - including RSD/CRPS - is that we are too often flooded with a thousand things at once. That's where it's most helpful to take things in bite-sized pieces, separate out the strands so to speak. Use the resources of sites like the RSDSA http://www.rsds.org/index2.html and American RSDHope http://www.rsdhope.org/ to more fully understand what's going on with the disease, while at the same time not losing touch with the non-RSD parts of our bodies or how - in the exact moment it's happening - pain stimulus impacts us emotionally. To the point that if the emotional experience is simply overwhelming, we break it down some more, until we can be aware of each "primary emotion" (fear, sadness, anger etc.) and ultimately get the the point that we can acknowledge and experience each without the need for resistance or guarding on our part and it's no longer a big deal. It's also important to literally take a few deep breaths and focus on the fact that with each exhale, you experience rest in your body, along with everything else that's going on. You can also look behind your closed eyes and see either primarily light, darkness or a mottled mixture of the two, and then rest for a while in whatever is most comfortable. And then be aware that your experience includes physical rest as much as it does physical or emotional pain. And that rest in your body is ALWAYS available as a place of refuge. Then, as with physical pain, and in time, we can acknowledge each sensation as it arises. After 10 years of this stuff, I think of it as standing securely on a ledge, under a gigantic waterfall. We may get very wet from the spray, but at the same time, we're not being pulled into the vortex below. :grouphug: Mike PS That said, we all slip off the wagon from time to time, even for weeks at a time. But it's no big deal, we just catch ourselves and get back on again. PPS Another trick along the same lines is learning that we don't have to define ourselves in terms of what we have always wanted to be. It's like at just a little distance, we can see how hard we were always trying to identify ourselves in terms of some preexisting notion or model. And since that was ultimately a matter of individual choice - societal expectations were there of course - we are free to redesign the template at any time, as circumstances dictate: or not use one at all. (To this day, I can relate my own epiphany, 18 months or so into this thing, in exacting detail.) |
Hi Mike,
Interesting perspective with the waterfall and ledge attributions. Very symbolic. I have recognized that stress is a major trigger for my flare ups so I was finally able to close my business (a source of major stress) of 23 years. That in of itself was a major stressor, and promoted a flare up. How crazy is that? The stress of relieveing stress promoted a flare up! For me, the SGB's still are helpfull even after 15 over 3 1/2 years. So looking at Ackerman's study, it would not apply to me since I have type II (more often related to SMP and not part of the study) and started SGB's at 6 weeks post-onset of CRPS symptoms. Any other scenerio would have ended tragically different I am sure. My pain doc assures me that I can continue having them periodically so long as they keep working, despite the literature. So be it. |
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? |
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But that doesn't foreclose other avenues. Has anyone raised the use of biphosphonates with you? They are not appropriate for everyone - in particular people who need significant dental work - but one major review of treatments found them the to be the ONLY treatment that met the authors, standards for effective CRPS treatment in a literature review completed in 2009, which for sn unknown reason, did not consider ketamine one way or another. See, Treatment of complex regional pain syndrome: a review of the evidence [Traitement du syndrome de douleur re´gionale complexe: une revue des donne´es probantes], Tran DQH, Duong S, Bertini P, Finlayson RJ, Can J Anesth. 2010;57:149 - 166, at 151 - 156, FULL ONLINE TEXT @ http://www.rsds.org/pdfsall/Tran_Duo..._Finlayson.pdf: http://www.ncbi.nlm.nih.gov/pubmed/20054678 Having said this, there has been a fair amount of discussion of biphosphonates on this forum through the years. I would encourage you to use the "Search" function at the top of NT pages, looking for threads with "biphosphonates" in the title. Mike PS As both Lit Love and Dubious note, and I acknowledge in the following response to Dubious, while this may apply in the majority of cases (and the blocks in fact stopped working for me after a few months) there are exceptions to every rule, this one included. Specifically, all bets are off where there is ongoing neuro-inflammation, typically where there has been spread to a previously unaffected limb withing the last few months, and apparently in some clear cases of CRPS Type II as well. |
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Thanks for the reminder. Your experience with Type II CRPS is consistent with information I've been seeing for a while: in folks with ongoing neuro-inflammatory activity, blocks still work. And how better to have ongoing inflammation than from a nerve injury that shows up like downed power lines in an ice storm! To that end, I recall a study from Stanford that was recruiting candidates with either fresh cases or CRPS or evidence of recent spread to a heretofore unaffected limb: also evidence of ongoing neuro-inflammatory activity. I suppose to know as a matter of certainty, you would need to have what may still be an experimental cytokine panel drawn from "suction blisters" on the CRPS and the "contra lateral" unaffected limbs, where although it's been established for some time that cytokine variations do not show up in plasma [see, e.g., Innate cytokine profile in patients with complex regional pain syndrome is normal, Beek WJ van de, Remarque EJ, Westendorp RG, van Hilten JJ, Pain 2001, 91(3):259-261] a different pattern emerges altogether in the blister fluids. And here I urge as many as possible to check out an important and far reaching article, which happens to include a handy paragraph for the instant discussion: Regulation of peripheral blood flow in complex regional pain syndrome: clinical implication for symptomatic relief and pain management, Groeneweg G, Huygen FJ, Coderre TJ, Zijlstra FJ, BMC Musculoskelet Disord. 2009 Sep 23; 10:116, FULL ONLINE TEXT @ http://www.biomedcentral.com/content...474-10-116.pdf: In a study with intermediate CRPS patients (disease duration 2.8 ± 1.4 years), we found a significant increase in IL-6, TNF-α and ET-1 levels in blister fluid in the CRPS extremity versus the contralateral extremity [89]. ET-1 concentrations in the cold chronic patients in the ISDN study were lower than those in our previous study, but still higher than levels previously reported by others [127,138,139]. Apparently, some of these chronic cold patients still had active inflammatory components, which may explain the case of one of the outpatients who was treated with a PDE5-inhibitor for a very cold painful foot in chronic CRPS. In a few days, the affected foot displayed full-blown warm CRPS. The classical signs of inflammation (rubor, calor, dolor, tumor and functio laesa) dependIn other words, it's possible that someone could still respond to blocks years after the fact, and clear CRPS Type II or recent spread to a previously unaffected limb may well serve as an indicator of ongoing neuro-inflammatory processes. And point taken. (Although I'm with the huddled masses who stopped responding after a few months.) 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 |
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. :( |
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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Were these just diagnostic blocks? They usually don't last long.
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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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