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 10-18-2009, 11:33 AM #1
Swatgen27 Swatgen27 is offline
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Default Radio Frequency Injections???

Has anyone tried a Radio Frequecy injection. I'm going in on next Friday and am nervous because it is not a normal procedure for treating RSD.
It is suppose to deadend the end of the nerve to prevent the pain signal going to the brain. The nerve will refuse itself within six months so it is not permenant. Has anyone tried this?
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Old 10-19-2009, 11:21 AM #2
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Hi, I'm Greg. I'm my wife's caregiver and she's had this *&^%%^$ for14 years and has tried about everything. SHE's supposed to go in Wednesday for this procedure. I've done a little researching on this site and elsewhere and we've decided to forego the thing. IN fact she's on the phone right now canceling the appt. with her neurologist. Some people on here say RUN don't WALK away from this treatment. I see it as likened to lobotomies back in the 50's and 60's. Almost medieval. Of Course, She has gone totally full-body and we shy away from invasive stuff because that will make it spread even more. If you do get this procedure. please post your progress. Maybe it'll work, but we don't want to take a chance. Good Luck
Greg and Karen
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Old 10-19-2009, 06:57 PM #3
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I've never heard of this. But, I'm sure you've investigated it, and, your doctor's success rate!?????
Be sure.

I think we'd all love to hear the outcome, and, surely hope that is does something positive, for this nasty disease!

Pete
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Old 10-19-2009, 09:03 PM #4
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Never heard of it either. I hope all comes out alright. I will keep you in my prayers....
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Old 10-19-2009, 10:31 PM #5
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I had an IME 2 months ago (wc), that Dr recomended my Dr do this procedure. They called it Radio Frequency Ablation. He said that since I responded to 6 stellate ganglion nerve blocks that it should help me. Btw, the nerve blocks only gave me 10 days of relief.After researching it and talking to my Dr I decided against it. My Dr said he didn't have good results and I could be left with Horner's Syndrome (droopy eye/face) until the nerves grow back, anywhere from 6 mo to 2 yrs. Also, the nerves will grow back and the pain may or may not come back....maybe worse. There is also the possibility the procedure will not help at all.

I have RSD in my left hand/arm so maybe results would be different for lower extremity but I am not willing to chance making this worse and having to deal with the Horners syndrome is just not something I am ready for. I am having a hard time accepting and understanding this as it is. I'm still waiting to wake up from this nightmare. I used to cry all the time, now even when I want to cry there are just no more tears.
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Old 10-19-2009, 11:39 PM #6
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Thumbs down

stressedout, I agree with your call. And from what I understand, the upside is somewhat lower and the downside is far worse for folks with lower extremity pain, requiring a lumbar procedure.*

To get a picture of the possible downside, I would check out just one article written by an avowed supporter of the precedure, Laxmaiah Manchikanti, MD, "The role of radiofrequency in the management of complex regional pain syndrome," Curr Rev Pain 2000;4(6):437-44, free full text at http://www.rsds.org/2/library/articl...anchikanti.pdf
Pain Management Center of Paducah, 2831 Lone Oak Road, Paducah, KY 42003, USA.

The nomenclature, pathophysiology, and treatment modalities of complex regional pain syndrome (CRPS) are controversial. Thus far there are no specific, scientifically valid treatments for the management of CRPS. The numerous modalities of treatment range from sympathetic ganglion blocks, intravenous regional blocks, administration of a multitude of pharmacologic agents and behavioral interventions, to surgical sympathectomy. Minimally invasive radiofrequency lesioning for managing CRPS is a modality in its developmental stages. This article describes radiofrequency lesioning techniques in managing CRPS. [Emphasis added.]

PMID: 11060589 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

While even the abstract sounds out of date compared to a few other things that were being published that year (say, Schwartzman RJ, "New Treatments for Reflex Sympathetic Dystrophy," NEJM 2000:654-655, free full text at http://www.rsds.org/2/library/articl...tzman_nejm.pdf) the kicker is when Dr. Manchikanti discusses "Complications of Radiofrequency" at page 442, and in particular, those mentioned in Sub-Paragraph 5 - which I understand to arise primarily from lumbar procedures for lower extremity pain - including "spinal cord infarctions . . . paraplegia . . . that may develop secondary to inadvertant lesioning of the spinal cord or its constituants." Please, scroll down to p. 442 and check them out: http://www.rsds.org/2/library/articl...anchikanti.pdf

Swatgen27, were any of these potential complications disclosed to you?

And is it any wonder, when physicians of the relatively conservative Division of Pain Medicine, Mayo Clinic (Rochester and Jacksonville) published "Complex Regional Pain Syndrome," R.H. Rho, R.P. Brewer, T.J. Lamer, and P.R. Wilson, Mayo Clin Proc. 2002;77:174-180, free full text at http://www.mayoclinicproceedings.com...2/174.full.pdf, that no mention was made the use of Radiofrequency ablation?

Radiofrequency ablation is a blast from the past, and that's where it should stay.

Mike

*On this, check out "Interventional Therapies," Allen W. Burton, MD, in the RSDSA's Complex Regional Pain Syndrome: Treatment Guidelines, R. Norman Harden, MD, editor (2006) http://www.rsds.org/3/clinical_guidelines/:
Wilkinson43 reports the largest series of percutaneous Radio Frequency (RF) lesioning of the thoracic T-2 distribution sympathetic outflow (RF sympathectomy), with over 350 procedures performed with 86% signs of sustained sympathectomy at 3-year follow-up, without any assessment of clinical analgesic or functional outcomes (level 3 evidence for interruption of sympathetic activity in a prolonged fashion with RF techniques).43 Wilkinson reports difficulty with lumbar percutaneous RF techniques due to variability of the lumbar anatomy versus the thoracic ganglion. He also reports a low rate of postprocedure neuralgic syndromes (around 5%), although this is recorded in an unpublished data format within a book chapter.42 This author could find no published data yet on pulsed RF sympathetic ganglion techniques. [Emphasis added.]

Footnotes
42. Kim K, DeSalles A, Johnson J, Ahn S. Sympathectomy: open and thoracoscopic. In: Burchiel K, ed. Surgical Management of Pain. New York, NY: Thieme Publishers; 2002:688-700.
43. Wilkinson H. Percutaneous radiofrequency upper thoracic sympathectomy. Neurosurgery. 1996;38:715-725.
http://www.rsds.org/3/clinical_guide...rventional.pdf

Last edited by fmichael; 10-20-2009 at 12:31 AM. Reason: post-script
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Old 10-21-2009, 07:32 PM #7
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Stressedout,
Thank you for the concern as I'm extremely concerned as well. In fact, I'm scarred s***less. Pardon my french....
I just don’t know what to do anymore, and I have run out of options as this is all I have left:
Manage it with medicine - and I find that 'medicine' does a poor job managing the RSD pain and I'm on a lot of medicine.
- Or -
Try one last thing (The R.F. injection) in hopes that I might feel comfortable in body again.
I know you said you did research and I have very little information on this procedure. In fact everyone here has told me more facts about this procedure than my doctor and the research that I have found.
You and your wife are in my thoughts and thank you for your advice.

Sarah
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Old 10-21-2009, 07:44 PM #8
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Thank you so much for the research information. My doctors and I discussed the risks a month ago and he did not mention the majority of those risks. In fact, he compared it to the nerve blocks that we have done and said that the risks were almost identical.
I know he has performed many of these and all his patients were able to walk away but that was my main concern..Mobility. It hurts a lot for me to move around but at least I can still do it..and the doctor said that my mobility would not be affected. Per the research you provided I now know different and this does not make me happy.
At this point, I will keep my procedure booked but now I have several different questions on my mind and those questions will have to be answered that morning prior to the procedure. If the answers I get don’t calm my ever increasing concerns than I won’t do the procedure. However, most likely I will try it because I'm desperate for just the littlest amount of
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Old 10-21-2009, 07:56 PM #9
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I had it done twice and it didn't work. When I had it done I had RSD in my right arm and shoulder. My RSD spread very quickly and now I wonder if the treatment helped the spread along. My RSD is full body.
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Old 10-22-2009, 01:05 AM #10
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Quote:
Originally Posted by Swatgen27 View Post
[1] At this point, I will keep my procedure booked but now I have several different questions on my mind and those questions will have to be answered that morning prior to the procedure. [2] If the answers I get don’t calm my ever increasing concerns than I won’t do the procedure. [3] However, most likely I will try it because I'm desperate for just the littlest amount of
Please know that we all wish you ease with your decision, however this turns out. Please recognize, however, that there is something of a disconnect between sentences 2 and 3, above.

Information alone can't comfort your concerns as a whole, it can only respond to the specific questions you put it to. More importantly, desperation is never a reason for rolling the dice, unless the option won't be around a month from know, should you decide to think it over. (And if that was in fact the case, I would think that someone was trying to pressure me.)

Were I in your shoes, I would bring (A) a printout of Dr. Manchikanti's article, including his list of "Complications of Radiofrequency," along with (B) a tape recorder with a 120 minute tape or similar recording device [in many states, it's your legal right, otherwise, explain that you want to ask about a number of things you have come across that were posted on the official RSDSA (Reflex Sympathetic Dystrophy Association of America) website, with which you are unfamiliar, and the tape is a more effective way of you attempting to retain information than simply taking notes] and (C) a close friend or family member for moral support as well as driving you home when it's over. Once the tape is running, I would:
1. Ask your doctor if he believes the list fairly summarizes the possible complications of your procedure, keeping in mind that lower body procedures appear to be trickier than those for the upper body;

2. Ask him what risks on the list can be ruled out in light of the procedure he's planning; and

3. As to each of the remaining risks, ask him. in a completely nonconfrontational tone, to explain the risk in terms you can understand, the approximate likelihood of the risk, and whether he has ever come across that particular complication, and if so, how many times, how did things end up, etc.;

4. Finally, I would ask him to estimate not only the length of time for which you could realistically expect relief, but whether, at the end of that time period, you would be likely be a good candidate to repeat the procedure with similar results, or whether there would be any expectation of declining results with subsequent procedures.
I suspect that with that information in hand, you'll be remarkably calm and confident in your decision, whatever it is. Good luck and remember we're always here if you need us.

Mike

PS I leave to your sole and complete discretion perhaps the most interesting question, which is why he had not previously disclosed these risks to you.
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