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-   -   RSD spreading very fast. Having 2nd nerve block today, i am scared. (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/158274-rsd-spreading-fast-2nd-nerve-block-am-scared.html)

Karen67 09-30-2011 05:07 AM

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

Russell 09-30-2011 07:17 AM

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...

Karen67 09-30-2011 07:28 AM

Quote:

Originally Posted by jimbo (Post 810728)
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...

OK...Jimbo... once again, you are one of the first to come to my rescue when I am flippin' out. Thank you for making me feel like I am not crazy, and I am going to ask my PM doc if I can have a block for feet and hands together. BIG:hug: Karen

Russell 09-30-2011 07:52 AM

Karen,
When you flip I'm there to catch.........lol
I'm off to my PT appointment so let me know how it goes....

kathy d 09-30-2011 11:28 AM

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

Karen67 09-30-2011 07:45 PM

Quote:

Originally Posted by kathy d (Post 810802)
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

Thanks for the awesome pep talk Kathy. Its almost 8pm and I just now got home from the PM doc. His office is hours from the town I live in. I am feeling pretty rough so I will post tomorrow morning about what we talked about and what not. Thanks for being there.:hug: Karen (iam going to bed).

alt1268 09-30-2011 10:32 PM

Karen,
I am so sorry for the fact that your going through this. I just got on. How did your shot/shots go?
:confused:

Karen67 09-30-2011 11:55 PM

Quote:

Originally Posted by alt1268 (Post 810979)
Karen,
I am so sorry for the fact that your going through this. I just got on. How did your shot/shots go?
:confused:

Pretty good I think. He only did one block, the second time for my right foot. They could not get my back numb enough to go really deep?? At least I think that's what happened I was crying from the pain from the block (I did not cry or have pain like this last time). So, he only did the one. Now my back hurts so badly that I went to bed at 8:30pm?? Or so. And now I am wide awake at 11:45pm from pain in back. Is this normal? It sure was sore last time but not screaming to wake the neighbors like this is. I hope I am just being a baby. (Would not be the first time). My BIGGIST fear is that the RSD is in my back. But I am well aware that I am an alarmist and this is just the kind of thing I could flip out over for no reason. I think I need to just make some tea, take a deep breath, and stop being such a freakjob about my back pain. Thanks for Anita, sorry 'bout the long winded answer.:hug: Karen ps. How are you doing sweetie?

alt1268 10-01-2011 12:36 AM

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:

Originally Posted by Karen67 (Post 810999)
Pretty good I think. He only did one block, the second time for my right foot. They could not get my back numb enough to go really deep?? At least I think that's what happened I was crying from the pain from the block (I did not cry or have pain like this last time). So, he only did the one. Now my back hurts so badly that I went to bed at 8:30pm?? Or so. And now I am wide awake at 11:45pm from pain in back. Is this normal? It sure was sore last time but not screaming to wake the neighbors like this is. I hope I am just being a baby. (Would not be the first time). My BIGGIST fear is that the RSD is in my back. But I am well aware that I am an alarmist and this is just the kind of thing I could flip out over for no reason. I think I need to just make some tea, take a deep breath, and stop being such a freakjob about my back pain. Thanks for Anita, sorry 'bout the long winded answer.:hug: Karen ps. How are you doing sweetie?


Russell 10-01-2011 08:29 AM

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...

Karen67 10-02-2011 07:41 AM

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

Russell 10-02-2011 08:20 AM

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...

fmichael 10-02-2011 04:32 PM

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?
By William E. Ackerman, III, MD

Yes and no. Not all CRPS patients respond to this therapy. If patients get transient relief, allowing them to participate in physical therapy or not have to increase their medications, sympathetic nerve blocks are indicated. If no relief is noted after two blocks, then why repeat them? The results will not be favorable. Sympathetic blocks must be performed early in this disease to be effective. At that time, 2 to 3 blocks are usually effective.

The longer the duration from the onset of CRPS until the first injection, the worse the results. For example, a patient with CRPS for 12 months will have poor results with a sympathetic block. However, if a patient receives an injection within the first 2.5 to 3 months, the results should be good. This is why an accurate diagnosis of CRPS must be made in a timely fashion. Failure to do so may condemn a patient to life-long severe pain.

A sympathetic nerve blockade, however, is not a totally benign procedure, with side effects that include elevated blood sugars, rash, itching, weight gain, soreness at the injection site, bleeding, seizures, and death. Blockades are also more efficacious with decreased vasomotor activity, but become less effective with increased vasoconstriction. Therefore, the effectiveness of a sympathetic nerve blockade is based on the duration of the symptoms and blood perfusion in the affected area.

RSDSA Review, Winter 2008
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:
Abstract
INTRODUCTION: The purpose of this study was to examine the efficacy of stellate ganglion blockade (SGB) in patients with complex regional pain syndromes (CRPS I) of their hands.

METHODS: After IRB approval and patient informed consent, 25 subjects, with a clinical diagnosis of CRPS I of one hand as defined by the International Association for the Study of Pain (IASP) criteria, had three SGB's performed at weekly intervals. Laser Doppler fluxmetric hand perfusion studies were performed on the normal and CRPS I hands pre- and post-SGB therapy. No patient was included in this study if they used tobacco products or any medication or substance that could affect sympathetic function. The appropriate parametric and nonparametric data analyses were performed and a p value <0.05 was used to reject the null hypothesis.

RESULTS: Symptom onset of CRPS I until the initiation of SGB therapy ranged between 3 to 34 weeks. Following the SGB series, patient pain relief was as follows: group I, 10/25 (40%) had complete symptom relief; group II, 9/25 (36%) had partial relief and group III, 6/25 (24%) had no relief. The duration of symptoms until SGB therapy was: group I, 4.6 +/- 1.8 weeks, group II, 11.9 +/- 1.6 weeks and group III, 35.8 +/- 27 weeks. Compared with the normal control hand, the skin perfusion in the CRPS I affected hand was greater in group I and decreased in groups II and III.
DISCUSSION:

The results of our study demonstrate that an inverse relationship exists between hand perfusion and the duration of symptoms of CRPS I. On the other hand, a positive correlation exists between SGB efficacy and how soon SGB therapy is initiated. A duration of symptoms greater than 16 weeks before the initial SGB and/or a decrease in skin perfusion of 22% between the normal and affected hands adversely affects the efficacy of SGB therapy.

Comment in South Med J. 2007 Apr;100(4):411-2; author reply 412.

PMID: 17100029 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/17100029

I hope this information is useful.

Mike

dd in pain 10-02-2011 07:51 PM

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.?

Russell 10-02-2011 08:39 PM

Quote:

Originally Posted by dd in pain (Post 811444)
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.?

I believe that is correct. I've been told by my neurologist that after two years of having RSD it's so well established in the nervous system that it's better to use meds for pain control. Blocks are more of a first line of defense type of thing...

fmichael 10-02-2011 08:39 PM

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.)

Dubious 10-02-2011 09:46 PM

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.

LIT LOVE 10-02-2011 11:19 PM

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?

fmichael 10-02-2011 11:28 PM

Quote:

Originally Posted by dd in pain (Post 811444)
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.?

Likely so. However, in contrast to the two-year cut-off point provided to jimbo by his neurologist, the study by Ackerman and Zhang found that 25 patients receiving stellate ganglion blocks for (upper body) CRPS broke out into three groups: those who had complete, partial and no relief whatsoever, and of those 25 who had either complete or partial relief, the longest duration between the onset of symptoms and the beginning of treatment with blocks was ONLY 13.5 weeks: or just a little over 3 months. [But see below.]

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:

Abstract
PURPOSE: This narrative review summarizes the evidence derived from randomized controlled trials pertaining to the treatment of complex regional pain syndrome (CRPS).

SOURCE: Using the MEDLINE (January 1950 to April 2009) and EMBASE (January 1980 to April 2009) databases, the following medical subject headings (MeSH) were searched: "Complex Regional Pain Syndrome", "Reflex Sympathetic Dystrophy", and "causalgia" as well as the key words "algodystrophy", "Sudeck's atrophy", "shoulder hand syndrome", "neurodystrophy", "neuroalgodystrophy", "reflex neuromuscular dystrophy", and "posttraumatic dystrophy". Results were limited to randomized controlled trials (RCTs) conducted on human subjects, written in English, published in peer-reviewed journals, and pertinent to treatment.

PRINCIPAL FINDINGS: The search criteria yielded 41 RCTs with a mean of 31.7 subjects per study. Blinded assessment and sample size justification were provided in 70.7% and 19.5% of RCTs, respectively. Only biphosphonates appear to offer clear benefits for patients with CRPS. Improvement has been reported with dimethyl sulfoxide, steroids, epidural clonidine, intrathecal baclofen, spinal cord stimulation, and motor imagery programs, but further trials are required. The available evidence does not support the use of calcitonin, vasodilators, or sympatholytic and neuromodulative intravenous regional blockade. Clear benefits have not been reported with stellate/lumbar sympathetic blocks, mannitol, gabapentin, and physical/occupational therapy.

CONCLUSIONS: Published RCTs can only provide limited evidence to formulate recommendations for treatment of CRPS. In this review, no study was excluded based on factors such as sample size justification, statistical power, blinding, definition of intervention allocation, or clinical outcomes. Thus, evidence derived from "weaker" trials may be overemphasized. Further well-designed RCTs are warranted. [Emphasis added.]

PMID: 20054678 [PubMed - indexed for MEDLINE]
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.

fmichael 10-03-2011 01:23 AM

Quote:

Originally Posted by Dubious (Post 811468)
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.

Dubious!

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) depend
highly on unimpaired circulation. Similar to the implications of the ET-1 measurements of the ISDN study, this case suggests that there may be patients with chronic cold CRPS with active inflammation who do not show symptoms of inflammation because of impaired vasodilation. Indeed, it has been shown that plasma extravasation does not occur in the later stages of ischemia-reperfusion injury after the development of no-reflow. Thus, oedema only occurs with leakage of plasma from the post-capillary venules of vessels that are adequately perfused [140]. This may account for persistent pain and other therapy-resistant symptoms in some patients.

Notes
89. Groeneweg JG, Huygen FJ, Heijmans-Antonissen C, Niehof S, Zijlstra FJ: Increased endothelin-1 and diminished nitric oxide levels in blister fluids of patients with intermediate cold type complex regional pain syndrome type 1. BMC musculoskeletal disorders 2006, 7:91.
127. Groeneweg JG, Huygen FJ, Niehof S, Wesseldijk F, Bussmann JB, Schasfoort FC, Stronks DL, Zijlstra FJ: No Recovery of Cold Complex Regional Pain Syndrome after Transdermal Isosorbide Dinitrate. A Small Controlled Trial. Journal of Pain and Symptom Management 2009, 38(3):401-408.
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In 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

LIT LOVE 10-03-2011 03:16 AM

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. :(

Karen67 10-03-2011 06:15 AM

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.

Karen67 10-03-2011 06:46 AM

Quote:

Originally Posted by LIT LOVE (Post 811481)
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? :hug: Karen

gramE 10-03-2011 09:22 AM

Were these just diagnostic blocks? They usually don't last long.

Dubious 10-03-2011 11:28 PM

Quote:

Originally Posted by fmichael (Post 811503)
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....

gramE 10-04-2011 08:33 AM

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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