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 07-13-2008, 01:48 PM #1
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Quote:
Originally Posted by janism View Post
Unfortunately I now have to report that my pain has returned and at this point is nearly back to the everyday levels I had prior to treatment (level 7/8 on a "normal" day). Obviously I'm extremely disappointed and for me at least, I wouldn't be willing to go back for more treatments - too much cognitive impact that I'm still recovering from (at least I hope so).

With the benefit of hindsight, there's one really significant observation I'd offer anyone considering treatment here and that is that as soon as you get pain relief, stop any further treatments. It's not that additional treatments do anything to carve in the outcome and "be sure"; instead the more treatments you have the more likely you are to be impacted by one or more of the adverse side effects. I got all of my pain relief in the very first treatment and wish I had stopped at that point. Additional treatments really didn't achieve any additional incremental relief, but did expose me to "fallout" I'd hoped to avoid and am still dealing with.

Just a caution based on my own experience here ...
I am so sorry this did not work for you! I hope you find something that will help you. I am happy that you had some pain free time. THank you for letting us follow your journey with you.
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Loving wife to J.
Loving mother of G-girl (5)
Loving mother of little J man (3)
Loving mother of Baby D (3 months)

I have the support of a loving husband, and two wonderful children. They make me get out of bed everyday, and fight the pain of RSD
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Old 07-13-2008, 05:01 PM #2
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Dear Jan -

I am very sorry that ECT was not successful for you. As I expressed in the article, it seems to work for about 2 out of 3 people. No one appears to know why for some and not others, where it's basically the only therapy out there I'm aware of that works as well on people who have had this for a long time, as opposed to helping those with relatively fresh cases or in people under a certain age. As to short-term memory loss, which I believe is what you complained of, it's supposed to go away in 4 - 6 weeks, max. The promising alternative is to do it with a ketamine anesthesia, which has been shown to cause no significant impairment in short-term memory after anesthesia clearance - 72 hours - but the trick there may be getting insurance company approval.

As to your last post, you should be aware that the literature doesn't necessarily support a "stop while you're ahead approach," suggesting that when there is a positive response to ECT, in terms of pain levels, shows that it is progressive over time:
There was a progressive lessening of pain over the course of ECT treatment. A course of 8 bilateral ECT treatments resulted in a dramatic reduction in pain.
"Case Reports: Chronic Pain With Beneficial Response to Electroconvulsive Therapy and Regional Cerebral Blood Flow Changes Assessed by Single Photon Emission Computed Tomography," Sei Fukui, M.D., Ph.D., Shino Shigemori, M.D., Atsushi Yoshimura, M.D., and Shuichi Nosaka, M.D., Ph.D., Regional Anesthesia and Pain Medicine, Vol 27, No 2 (March–April), 2002: pp 211–213 at 212; "Electroconvulsive Therapy in Complex Regional Pain Syndromes," William W. McDaniel, MD, J ECT 2003;19:226–229 (reporting on one of three participants in ECT treatments for pain co-morbid with major depressive episodes):
Her right arm had been injured in a motor vehicle accident 5 years earlier, and although the multiple fractures had healed, she developed severe CRPS and her dominant right hand was crippled by joint contractures. She listed the pain and disability as the most important stressors contributing to the depression. She was hospitalized with suicide precautions. Her ineffective antidepressant medications were discontinued. She was treated with a series of 12 treatments of ECT with bitemporal electrode placement under anesthesia with methohexital 80 mg and succinylcholine 80 mg. Her ECT was performed using the MECTA SR-1 using a dose titration protocol with the dose set just above the seizure threshold. The treatments were well tolerated, and she demonstrated improvement in mood beginning by about the third treatment. Her immobile right hand began to move after the fifth treatment, and physical therapy was initiated. By the 10th treatment, the pain, stiffness, discoloration, and coldness had resolved. By the 12th treatment, the remission in her depressive symptoms seemed stable, with normal sleep, appetite, and concentration, and treatments were discontinued.
Finally, in their 1993 study:
King and Nuss reported the case of a 32-year-old woman status post left arm injury and arthroscopic repair of ligament damage. She subsequently developed reflex sympathetic dystrophy of the left arm characterized by weakness, piloerection, swelling, decreased range of motion, discoloration, hyperesthesia, and disability from work and sports activities. She became depressed and was admitted to a psychiatric unit. Behavioral pain management approaches, antidepressant medication, and stellate ganglion block did not help, and after a suicide attempt, ECT was commenced. For 12 hours after the first treatment, the arm was normal in function, pain free, and not discolored. Over the course of the next seven treatments, the period of improvement steadily increased. On 6-month follow-up, the patient’s arm remained normal in function and without the objective physical stigmata of reflex sympathetic dystrophy. [Emphasis added.]
"Reflex sympathetic dystrophy treated by electroconvulsive therapy: intractable pain, depression, and bilateral electrode ECT," King JH, Nuss S: Pain 1993, 55:393–396, as cited in "Electroconvulsive Therapy in the Management of Chronic Pain," Rasmussen KG and Rummans TA, Current Pain and Headache Reports 2002 6:17-22 at 20.

Having said this, it is my understanding, at least in the context of depression, that ECT is generally discontinued after roughly the sixth treatment if there is no sign of improvement by then. Since the same psychiatrists would likely be administering ECT for pain conditions, the same rule of thumb might be used.

Personally, if I could swing the insurance issue without a diagnosis of depression (the ironic price I pay for having successfully begun a meditation practice five years ago specifically developed for pain patients, Jon Kabat-Zinn's Mindfulness Based Stress Reduction: MBSR) I would play the odds and do maybe 9 RUL ECT treatments over three weeks, without any real hesitation, although preferably in-patient with ketamine anesthesia to minimize the risk of short memory loss with which you had to contend. FULL DISCLOSURE: the Baclofen I'm on for otherwise constant spasms already wrecks havoc with my short term memory and ability to attend to matters that don't hold my interest, so perhaps I don't have all that much to lose.

Mike

p.s. No direct links to cited articles available, but Fukui and McDaniel pieces are on RSDSA Medical Articles Archive page at http://www.rsds.org/2/library/articl...ive/index.html

Last edited by fmichael; 07-14-2008 at 12:49 AM. Reason: further thoughts and hopefully, clarity
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Old 07-13-2008, 06:24 PM #3
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Jan

I too am so sorry this did not work for you

I am so impressed with your courage and bravery
Thank you so much for sharing your experience

In this Olympic year I will borrow this sports adage that certainly transcends the medium .

"No guts, No Glory"

Jan- this fits you to a T .
You gave it your all

- for that you should always be proud.

peace and more

GnP

Last edited by Goodn'Plenty; 07-13-2008 at 10:38 PM. Reason: syntax
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