First post and wanted to introduce ourselves (I'm David, writing for my wife, Alexi who has CRPS) Alexi was diagnosed maybe 8 or 9 years ago. Her CRPS was kicked off as a consequence of a discectomy and fusion of several cervical vertebrae (C2-5?) she underwent to address degenerative disc disease. After a typical convalescence the pain lingered. Worked with a pain management doctor over a year as the symptoms developed and worsened. Got a definitive diagnosis after a test for Horner's syndrome. Alexi presents nearly all the symptoms - the neuropathic pain, Allodynia, Edema and discoloration (more prominent on one side of her body - I can't recall if its the left side or the right side), hyper sensitivity to touch, temperature and sound. When untreated the symptoms can worsen to skin peeling, fingers curling and immobile, difficulty standing and walking, all with the extreme pain sensations.
Its been an ordeal figuring this all out, finding compassionate and informed medical professionals, scheduling the expensive inpatient treatments. Currently, Alexi is managing the daily pain with opiate medication and Lyrica and undergoes inpatient Ketamine Infusion therapy hospital stays which have offered the best results and even put the symptoms in remission.
She went to Dr. Timothy Lubenow at Rush University Medical Center in Chicago and more recently Dr. Semih Gungor at the Hospital for Special Surgery in New York. About a month ago Alexi's CRPS symptoms were returning and she recognized that she was coming out of remission. So she contacted Dr. Gungor to schedule an infusion treatment only to learn, much to her dismay, that Dr. Gungor has decided (after 7 years as a patient) that he will no longer treat her! (that's another topic for a separate post) leaving us "high and dry". So now we're scrambling to find new doctor who will perform the Ketamine Infusion (and accepts our insurance), and that's part of what brings us to this forum. We've found a doctor in New York who performs outpatient booster infusions, Dr. Glen Brooks of New York Ketamine Infusions LLC, but he does not participate with insurers, so we're looking at paying 50% of the bill out of pocket if my insurance covers as Out-of-Network.
Anyway, I (David, the husband) figured we can appeal to this forum for support in this process and also, due to extensive experience battling this disease, join the commuinty and offer help to others just starting to confront CRPS.
David and Alexi