YA!!!!! I'm doing a happy dance for you! NO PAIN?!?! What is that like? I'm so happy for you I'm crying! That is so amazing!

It's surreal, let me tell ya. It makes you just pinch yourself and wonder was all of that really real? It's just GONE.

Now I just wish the same for the rest of you ...

The nurse called me back today. She says that when she brought it up to the doctors they told her "We have heard of it, and [I]we[I]do not do that! It is for people with [I]other[I]issues" I started to bawl on the phone with the nurse. So on to plan B. I'm going to call every hospital in america and some European countries till I find someone that will do it. I'm not dep[ressed by any means so I doubt I could get it done for that.

The day after the second treatment this time is MUCH more comfortable. I think they gave me Toradol this time and whether it's responsible or not - I don't have the extreme muscle soreness that I did after the first treatment.

If the rain will hold off here, I think I'll go work my RSD knee in the pool this afternoon. Need to build up some strength.

WOOOHOOO!!!! How exciting! I"m happy your not as sore this time! I hope they found the right mix of things.

This is most exciting news
I am SO SO happy for you
I am going to find out how I can do this right away so I can be next.

I will meet you on the slopes next year-

Gmom-Did you bring Mikes article and all the article he has referenced with you posted at the beginning of this thread to an appointment with these people ?.
It will certainly strengthen your argument if you go prepared and armed with evidence that this is a viable option!
They will have no reason to turn you down !!!
Good Luck

Peace
GnP

I did give that to the nurse. The doctor wont even talk to me. I am now trying to get in touch with research hospitals. So we will see. If you find someone that will do this for you please let me know who they are! I will let you know what I find out as well. If you want to know about the cost with out insurance it is about $1500 each time. I'm not sure what insurance will cover and what it wont. I have to pay out of pocket though since I can't get insurance. GL in getting it done! I'm so excited that there is some hope!

Dear GJmom -

My heart was saddened to hear of your experience with your local hospital, but it fits with what happened to me, when I guy who had come well recommended excused himself as a "small town ECT doc" who couldn't posibbly get his hospital to approve it and suggested instead that I seek out a "tertiary medical center," i.e. something connected to a major medical school, and that's where I'm going. The alternative, as has been suggested in this thread, is to ask yourself whether RSD and the resulting social isolation has left you really depressed. If the answer to that one is "yes" then we need say no more . . . .

Secondly, janism raised the issue of memory loss. In addition to using RUL etc., the other thing that really struck me when I put together ther article was research showing that there wasn't even any temporary loss in short term memory when ketamine was used as the general anesthetic, which is really exciting because short term memory loss was always understood as just the basic price of admission for the procedure.

I wish you only good luck in finding a place that can do this for you.

Mike

ps Janism raised the list of article that I will happily email to anyone in pdf formats. For anyone's reference, that list is as follows:

Key Relevant Articles re RUL ECT as Treatment for CRPS-1 (RSD)

1. Rasmussen KG and Rummans TA, "Electroconvulsive Therapy in the Management of Chronic Pain," Current Pain and Headache Reports, 2002, 6:17-22;

2. Wolanin MW, Gulevski V, and Schwartzman RJ, "Treatment of CRPS With ECT," Pain Physician, 2007, 10:573-578;

3. McDaniel WW, "Electroconvulsive Therapy In Complex Regional Pain Syndromes, The Journal of ECT, 2003, 19:226-229;

4. Wasan AD, Artin A, and Clark A, “A Case-Matching Study of the Analgesic Properties of Electroconvulsive Therapy,” Pain Medicine, 2004, 5:50-58;

5. Sackeim HA, Prudic J, Fuller R, et al., "The Cognitive Effects of Electroconvulsive Therapy in Community Settings," Neuropsychopharmacology, 2007, 32:244-254;

6. Takano H, Motohashi N, Uema T, et al., "Changes in Regional Cerebral Blood Flow During Acute Electroconvulsive Therapy in Patients With Depression, British Journal of Psychiatry," 2007, 190:63-68;

7. Fukui S, Shigemori S, and Nosaka S., "Changes in Regional Cerebral Blood Flow in the Thalamus After Electroconvulsive Therapy for Patients With Complex Regional Pain Syndrome Type 1 (Preliminary Case Series)," Regional Anesthesia and Pain Medicine, 2002, 27:529-532;

8. Maihööfner C, Handwerker HO, Neundöörfer B, et al., "Cortical reorganization during recovery from complex regional pain Syndrome," Neurology, 2004, 63:693-701;

9. Nobler MS, Oquendo MA, Kegeles LS, et al., "Decreased Regional Brain Metabolism After ECT," Am. J. Psychiatry, 2001, 158:305-308; and

10. McDaniel WW, Sahota AK, Vyas BV, et al. "Ketamine Appears Associated With Better Word Recall Than Etomidate After a Course of 6 Electroconvulsive Therapies," The Journal of ECT, 2006, 22:103-106.

Hi I am so happy to hear about your results- it is just incredible. So much hope for all of us. I was wondering if you would mind just posting what state you are in-(and still protect your privacy) just because you were able to get approval so quickly. It would give a good reference for the rest of us who want to pursue this. Thank you so much, CZ

It's really not about the state I'm in, altho if you PM me I'll be glad to share that with you as well. It's about the fact that I was already established with a psychiatrist and had a well-documented history of depression. That put me in the proverbial fast lane and all I had to do was ask.

It's worth noting that several storms have now moved through the area and have had NO IMPACT. In the past, that was all it took - a significant shift in barometric pressure and I'd be crippled and bedridden with level 9/10 pain. This is a tremendous turning point for me.