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Sapho syndrome after 4 surgeries after face shattered and fractured eye socket

forget; everything cost money i guess. My particular pain issues are a result of being attacked by a stranger. He shattered the left side of my face, fractured my eye socket and the base of my skull . After 4 facial reconstructive surgeries in one year, battling bone infections and implants, and a multitude of procedures and consults with every specialist on the eastern coast, it became apparent that the facial pain was not going to go away, and it was then, in December of 2000, I was diagnosed with a form of Trigeminal Neuralgia , Trigeminal Neuropathic Pain , (TNP): facial pain resulting from unintentional injury to the trigeminal system from facial trauma , as in my case. It is a VERY PAINFUL condition. It affects the left side of my face (2nd branch of the Trigeminal Nerve ). TNP is dreaded complication of facial surgery and is commonly known as the “ suicide disease” as a result of the higher than normal rate of suicide from its sufferers. While the disease itself is not a terminal condition, the intense, unending pain inflicted upon those who suffer from it can cause it to be.I have had this condition since 2000. That was 12 years ago. I am now 40 and have spent the last 12 years trying to manage this pain, instead of it managing me. I have tried many therapies and surgeries, and have seen numerous specialists that all have come to the conclusion that Pain Management is the most effective means to treat the pain, as the nerve has been severely and permanently damaged. As I explain briefly above, this condition evolved after numerous facial reconstructive surgeries. The first surgery was in 1991, after I was assaulted by a stranger, resulting in a fractured left eye socket, shattered sinuses, and a fracture to back of skull. Surgery was performed the next day and they performed a skull bone graft and used titanium plates and screws to rebuild what they could on the left side of my face. After a few years, it became evident that there was a problem in the sinus area as it was consistently swelling, requiring antibiotics every 6 weeks to control. In 2000, I began a series of surgeries to repair a dreaded complication, a bone infection in the facial bones. It turned out that the original metal plates and screws became loose, and created a bone infection (Osteomylitis) and chronic inflammation around the major facial nerve. During this year of surgeries, the metal plates were removed; a medpor implant was put in and then taken back out due to continued infections, and although a rib graft was scheduled, this too was aborted as it was determined there was too much infection and inflammation to proceed. I never did have the area rebuilt and now also as a result, my left eye was left with no real support, leaving it to slowly recede, now causing even more problems, double vision, and increase pain in the eye. I also had to have a catheter implanted in my chest to have the long term antibiotic treatment, and spent weeks in a hyperbaric chamber in between these surgeries. So, after the numerous surgeries, the left Trigeminal Nerve was permanently damaged. Over the last decade, I have seen numerous specialists, including the Head of Neurology at Johns Hopkins University, the Head of Neurology at Tampa General, and the Trigeminal Neuralgia National experts at Shands at the University of Florida. Due to the severity of my symptoms and cause of the injury, each concluded that surgical intervention is not a possibility and that the best course of treatment should be administered medically. HOWEVER; I am at this point wondering (as I am suffering another bout of infection of the area/steroids & antibiotics again every 2-4 months) could this be SAPHO syndrome? I have no implants left (they took them out and aborted procedure to use rib grafts as it was still too inflammed)...Tired of being in pain, and would like my face fixed (when not swollen, it is sagging and really starting to affect my vision etc). any help...any help at all.YYYY@YYYY (sorry for any redundancy-quite possible)
Asked On : Fri, 27 Apr 2012
Answers:  1 Views:  174
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Orthopaedic Surgeon 's  Response
Thanks for writing to us.
You have given a good description of your problem. A physical examination is imperative in your case to make an assessment. This is not something that can be diagnosed online. Still I do not feel that what you are dealing with is a sapho syndrome.
I hope this information has been both informative and helpful for you.
Dr. Praveen Tayal
Answered: Fri, 27 Apr 2012
I find this answer helpful
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