Thanks betsykk. Perhaps I should read Barby Ingles book. It'll be a trick to convince my wife to give ketamine another go, but one never knows. I'm very glad your daughter had great results, what a relief that must be for your family. Again thanks for the advice, and the book!

I am from delaware and am traveling to baltimore to Dr. maine at Mercy hospital. I find he and his PA are very supportive and well worth the drive. I have had many sympathic nerve blocks only lasting 7-10 days. We tried a trial stimulator, which I didn't have more then 50% improvement. Another girl with RSD though had excellent results. I also had tried a tens unit, prior to all of this, not thinking I already didn't want things to touch my foot and a tens unit requires something to be on it. (da!)(had a brain fart!) He doesn't do Ketamine and I am not sure I would want it with the side effects. But so far all my treatments have not been very invasive.
anita

Thank you Ballerina. I am in Spotsylvania, Va, near Fredericksburg.

Calracci, did you see my post?

Hi Jim and thank you for the info. I have copied it but am hoping not to have to travel that far. I have a real problem driving that distance because of my rsd in my knees and ankles and my spinal problems and rsd in back. I can't believe how few drs are in this area though I do know that rsd drs are always hard to find so really appreciate the info. I may be forced to travel that far and will definitely call that dr if I can't find a closer one.

Is this dr. one who will agree not to do invasive treatments? I will not do that and am not a good risk for ketamine treatments because of my copd. Implants are totally out for me. I have Sjogrens Syndrome and would reject it but hate the idea and fear infection anyway.

Thank you all for your welcome and please let me know if you hear of a dr. closer to me. I am going to be out of medicine after this month and am really in a panic.

Thanks again.

My wife does not tolerate any invasive treatment at all. Dr. Quint will recommend this or that but is not in the business in selling implants, performing surgery etc. Sometimes Dr. Quint and the wife have spats because she lets the doc know that she is not going to allow any tampering with her body. My wife did have ketamine infusions sometime ago and booster shots from Dr. Quint with no luck. Dr. Quint pushes Suzy to exercise, Yoga, work in the garden, watch what foods one eats etc. Of the many doctors we've experienced in 10 years this doctor was the best fit for Suzy.
There's a member of NeuroTalk who lives in Fredericksburg. She ended up getting a morphine pump implanted and raved about it. She said her RSD pain was about gone. She posted less and less. Her NeuroTalk name is "lostmary". Do a search on lostmary and check out her posts to see if she lists any doctors in the Fredericksburg area. Here is a post she started sometime back. And Good luck!

http://neurotalk.psychcentral.com/sh...light=lostmary

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

Interesting Ambika, thanks for the post. Sounds familiar, I've ran across this info sometime ago. I think one of our members named Michael has touched on this before. Apparently this is treatment performed mainly in Europe? Anymore links you can provide about this procedure would be great, thanks.

Hello,

I am a RN that has a daughter with CRPS. i am working with a seasoned MD and we are starting up a Ketamine infusion center in CA, and we will take insurance. I am excited to do this but need some help. I need to start working with the different insurance company’s to get their take on approvals. I do not want to pressure you, but maybe we can talk?

Dear momofrsd - Where in CA are you planning to start up a Ketamine infusion center?
tx!