Hello Daniella,
Earlier today I reviewed the center's website and spoke to someone at the research institute part of the center. I was horrified that the RSD/CRPS Treatment and Research Center is not what its name proclaims it to be. All of the "research" is done on the few treatments offered/sold at the center. There are many more treatments than Ketamine and nerve blocks. Maybe these work for some people, but I believe a place that claims to research and treat CRPS should research and treat all available and proven treatments. This center is essentially a Ketamine treatment facility with an arm that uses 'research' to market the Ketamine treatments offered at the facility. I'm 58 and lived for 30 years with severe CRPS, until I had Iv Ig 20 grams plus 9 grams of glutathione infused every 21 days. Research in England and France has recently discovered and documented the process of autoimmune attack upon nerves in CRPS. In addition, more and more people with CRPS and other autoimmune diseases are getting much relief and/or remission with Iv Ig. Before Iv Ig, I did not get nearly enough relief from all the pharmaceuticals I needed to manage symptoms. I use to take: Neurontin/Gabapentin 3600 per day; Klonopin 2mg at bedtime; Cymbalta 120mg per day; Methadone 5 mg twice a day; Lidocaine patches (liberal use!). I'm now off of all those meds and not in any pain. If I overdo, as I did while moving, I begin developing symptoms in my feet, which is where the CRPS process first began in my body. If I don't overdo walking and time on my feet, I am symptom free. I wish everyone with CRPS would get the opportunity to try Iv Ig in an appropriate dose at an interval of 2 to 3 weeks between infusions. The website of a non-profit called Advocacy for Patients (www.advocacyforpatients.com) has an Iv Ig support tab which provides access to letters and research papers Advocacy for Patients has used to successfully appeal denials of insurance for IvIg coverage for MS, CRPS, etc. At least Advocacy for Patients is not also selling IvIg treatments!!! People with autoimmune and other chronic illnesses can use the free services of Advocacy for Patients for help to get approval of insurance for IvIg treatment for CRPS!!!
One thing you or others may wish to ask your doctors to do is to order a blood test for you of immunoglobulins G and G subclasses plus immunoglobulin A. If, like me, you are like many others with autoimmune diseases (Yes, CRPS is now recognized as autoimmune- check out research most easily accessed at www.advocacyfor patients.org), you may have clinically low levels of immunoglobulins. In that case, then IvIg is an on-label treatment. Even so, off-label is not a valid reason for insurance companies to deny treatment. Insurance companies simply deny coverage as a matter of course at first request. Good appeals are not the ones that are simply a doctor stating that he recommends the treatment. Good appeals include a letter from a lawyer and properly conducted research, along with documented information about the efficacy of IvIg treatments. Advocacy for patients puts together good appeals for free. I am not associated with Advocacy for Patients. I found this wonderful resource in the course of my ongoing research. Since my recovery from CRPS, I want to share with all that, first of all, recovery is possible. I am living proof. I want to share with all the treatments that helped me recover and the resources available for getting insurance to cover the treatments that helped me get well. With Love! Ambika