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6/22/2017 Latest post:
Maybe my Bertolotti's Syndrome (BS) story "began" when I couldn't sit for two years in college or when I started to mysteriously get right external ankle pain when I was 32. (Because external pain at the sural nerve or at the external knee is how BS symptoms manifest and USUALLY they begin around the age of 30 for patients.) What is amazing is that for over THREE YEARS no one caught that my ankle pain was a back issue, I actually had ANKLE SURGERY. And even when seeking a second ortho opinion and receiving treatments for the next few years, NO LOCAL PHYSICIAN EVER DIAGNOSED ME WITH BS. I had to piece it together myself and keep seeking experts to find answers. So after many years with increasing pain and using crutches, it is only in the last few months that treatment options have become available to me, whereas before I was told to "get a standing desk and go back to work," (by one local doctor). Welcome to Heidi's Caring Bridge website, created to keep family and friends updated about my recovery from an extremely RARE congenital back condition known as Bertolotti's Syndrome. May 12th was the 5 year anniversary of when my ankle pain began. On May 19th, I had a phone consult with a neurosurgeon in NYC who specializes in BS. He needed me to get a shot to confirm what he suspected was true. So on June 12th, I had an x-ray guided steroid shot at the right transverse alar junction. GOOD NEWS: The shot confirmed I have BS type IIc BAD NEWS: The shot has caused me to have the WORST PAIN OF MY LIFE. Due to the pain and increased inability to function, I'm reaching out for help.