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

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?
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

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...

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.



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?

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.

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.
138. Pache M, Schwarz HA, Kaiser HJ, Wuest P, Kloti M, Dubler B, Flammer J: Elevated plasma endothelin-1 levels and vascular dysregulation in patients with rheumatoid arthritis. Med Sci Monit 2002, 8(9):616-619.
139. El Melegy NT, Ali ME, Awad EM: Plasma levels of endothelin-1,
angiotensin II, nitric oxide and prostaglandin E in the venous and cavernosal blood of patients with erectile dysfunction. BJU Int 2005, 96(7):1079-1086.
140. Menger MD, Pelikan S, Steiner D, Messmer K: Microvascular
ischemia-reperfusion injury in striated muscle: significance of "reflow paradox". Am J Physiol 1992, 263(6 Pt 2):H1901-1906.

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