Dear Sarah -

So very sorry you had such a miserable time yesterday.

I am, however, equally troubled by your doctor's suggestions that the only other techniques are "more invasive." This sounds 15 - 20 years out of date, where there exciting research is being done with medications.

If and when you have the energy, I would urge you to read "Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study," Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 (in press), FREE FULL TEXT at http://www.rsds.org/2/library/articl..._Pain2009.pdf:

ABSTRACT
Complex regional pain syndrome (CRPS) is a severe chronic pain condition that most often develops following trauma. The pathophysiology of CRPS is not known but both clinical and experimental evidence demonstrate the important of the NMDA receptor and glial activation in its induction and maintenance. Ketamine is the most potent clinically available safe NMDA antagonist that has a well established role in the treatment of acute and chronic pain. This randomized double-blind placebo controlled trial was designed to evaluate the effectiveness of intravenous ketamine in the treatment of CRPS. Before treatment, after informed consent was obtained, each subject was randomized into a ketamine or a placebo infusion group. Study subjects were evaluated for at least 2 weeks prior to treatment and for 3 months following treatment. All subjects were infused intravenously with normal saline with or without ketamine for 4 h (25 ml/h) daily for 10 days. The maximum ketamine infusion rate was 0.35 mg/kg/h, not to exceed 25 mg/h over a 4 h period. Subjects in both the ketamine and placebo groups were administered clonidine and versed. This study showed that intravenous ketamine administered in an outpatient setting resulted in statistically significant (p < 0.05) reductions in many pain parameters. It also showed that subjects in our placebo group demonstrated no treatment effect in any parameter. The results of this study warrant a larger randomized placebo controlled trial using higher doses of ketamine and a longer follow-up period.

(c) 2009 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.

What's so significant about these results, as you can see reading the study, the study, is that no effort was made to limit the study participants to individuals who had been symptomatic for six months or less at the time of treatment: a group that is far more likely to benefit from any number of therapies than are those who have had this condition longer. And the out-patient treatment used by Dr. Schwartzman in this study is being implemented at a number of centers around the country. (I just can't have it because of pre-existing glaucoma.)

And on a different but also promising tract, please read "An Effective Treatment of Severe Complex Regional Pain Syndrome Type 1 in a Child Using High Doses of Intrathecal Ziconotide (Letter to the Editor)," Stanton-Hicks MD, Kapural L, J Pain Symptom Management 2006;6:509-510, FREE FULL TEXT (and a couple of amazing photos) at http://www.rsds.org/2/library/articl...32_6_pg509.pdf, which was followed more recently by "Intrathecal ziconotide for complex regional pain syndrome: seven case reports," Kapural L, Lokey K, Leong MS, Fiekowsky S, Stanton-Hicks M, Sapienza-Crawford AJ, Webster LR, Pain Practioner 2009 Jul-Aug;9(4):296-303:

ABSTRACT
Ziconotide is a nonopioid analgesic currently indicated as monotherapy, but frequently used in combination with opioids, for the management of severe chronic pain in patients for whom intrathecal (IT) therapy is warranted and who are intolerant of, or whose pain is, refractory to other treatments. There is a paucity of information regarding ziconotide use in patients with complex regional pain syndrome (CRPS). Seven cases in which IT ziconotide was used in patients with CRPS were analyzed. All patients (4 male, 3 female; age range, 14 to 52 years) had experienced inadequate pain relief with multiple conventional and interventional treatments. Three patients received ziconotide monotherapy exclusively; 4 patients received ziconotide monotherapy initially, then combination IT therapy. The mean ziconotide dose was 5.2 mcg/d (range, 0.5 to 13 mcg/d) at initiation and 24.7 mcg/d (range, 0.06 to 146 mcg/d) at the last available assessment. The mean duration of ziconotide therapy was 3.1 years (range, 26 days to 8 years). At ziconotide initiation, the mean visual analog scale (VAS) score was 89.3 mm (range, 75 to 100 mm); VAS scores decreased by a mean of 47.5% (range, 5% to 100%) at last assessment. Of the 5 patients who experienced substantial improvement in pain, edema, skin abnormalities, and/or mobility with ziconotide therapy, 2 have discontinued ziconotide and are pain free. Another patient experienced marked reversal of both edema and advanced skin trophic changes. Adverse events included urinary retention, depression, anxiety, and hallucinations. Adverse events generally resolved spontaneously, with treatment, or with ziconotide discontinuation/dose reduction. Although further studies are required, ziconotide holds promise as an effective treatment for CRPS.

PMID: 19500276 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

And note that the reported success rates in the foregoing studies were considerably better than the 1:5 you were quoted.

I apologize for laying all this on you. I just want you to know that there are kinder/gentler options out therebefore you return to your local butcher: even if he's on the faculty of a very good medical school, he's living in the past. So what I am suggesting is that before seeking further treatments from the same fellow, you seek another opinion. Since you live in Illinois, I would suggest the Cleveland Clinic, and specifically Michael Stanton-Hicks, M.D. Where he is now on senior status, I have been told by his department that he only sees patients with established cases of CRPS and then will do so only after first reviewing their medical records. Here's his directory page at the Cleveland Clinic http://my.clevelandclinic.org/staff_...taff_1175.aspx I believe the number for reaching his secretary is (216) 444-7246.

Finally, here's his departmental homepage http://my.clevelandclinic.org/anesth...t/default.aspx

And once again, I am so sorry for what you are going through.

Mike