Hello everyone,
My spouse has suffered with RSD in the knee resulting from an operation that was not even in the knee. Conventional nerve blocks were not providing relief. We were introduced to Dr. Richman in New York and recently completed a week long inpatient Ketamine treatment. This is the first relief that has worked in 8 months. But it is not over, there are booster treatments to follow.

My problem is that our major insurance carrier with a high option plan is only paying the first two hospital days and has started denying the rest as experimental. Bad enough I may have to pay out of pocket for several days of hospital but also I am worried they will deny the boosters which means, all of this was for nothing?

The insurance companies say there are not enough studies and it is all experimental. They endeavor to ignore the facts that have been published for the last 10 years because on technicalities, they want bigger studies. The only way I can see to change this in the near term is with nationwide evidence that on a case by case basis, treatments ARE being paid for. If we can get organized with that evidence, we should be able to improve the chances of coverage being approved.

Some of you have had luck with your insurance. I would like to suggest that we pool information in some way that can be shared. This must be done in a way that maintains our confidentiality of course! I will be happy to host phone conferences, face to face meetings, whatever will work. What I am hoping we can do is to start lists of this kind of information:
1. A really complete list of studies and results for all treatments. There are many incomplete lists out there because each site is run by different volunteers with limited time and resources, and most of the lists are not updated.
2. CRPS and RSD treatments that are easily paid for by insurance
3. CRPS and RSD treatments that are difficult to be paid for by insurance
3a. A list of Doctors who have been successful in getting insurance companies to pay for treatments in list number two.
3b. Reasons given by insurance companies for denying payment for treatments in list number two.
3c. Examples of successful appeals for treatments in list number two that resulted in the insurance paying up. In particular, examples of the language of the appeals and the evidence given in the appeals (such as publications and studies) that made the appeals successful.
4. A list of case study stories for reference as to what works and does not work when dealing with insurance companies - completely confidential.
5. A list of people who would be willing to act as contacts to talk to persons with similar predicaments with their insurance companies. This could also be done in a way to protect confidentiality - at a minimum by private messages in a forum like this.

Anyone interested in working with me on this? Please post to the forum and and send me a message!

This is the first and only discussion I have found on the internet regarding insurance, payment and coverage questions! And yet to me it is one of the most important discussions that needs to happen. I am not proposing to replace other CRPS or RSD sites. I would be happy to work with any existing site and webmaster to make this happen. On the other hand, I have time, and a lot of webspace, and I will make this a personal priority.