My SS was found about five years ago, incidentally on a head and neck mri done because of headaches and neck pain. The local neurosurgeon knew enough about it to identify it but nothing else. He sent me to a “supposed” specialist at a university hospital. He also identified it as SS but neither of them knew to look for a cause even though I have never had a head injury.
I ended up doing my own research and with the help from folks on the SS Facebook page, I felt sure I had a spinal leak. I sent my scans to Mayo to Dr Neeraj Kumar and he immediately saw the leak that the others had missed. He had me come to Mayo for further testing and found a large leak at T-4 and intercranial hypotension. He set me up with Dr John Atkinson and I soon had surgery to repair the tear in my dural lining, thereby stopping more iron deposits. Their imaging stated that I had iron deposits on my brain, 7th & 8th cranial nerves, cervical and thoracic spine with substantial damage to my spine.
So far my hearing is holding steady but my balance is poor and have severe fatigue at times.
I wanted to post on here in case someone was like me and had a diagnosis of SS but their doctors didn’t know to search for a cause. At this time I have chosen to not take Ferriprox to try to remove the deposits.