I have been reading through the blog entires and I have cone to realize what my biggest regret is.
My biggest regret is that not everyone has had the access to the care I have been blessed to have. It has not always easy dealing with Oregon Medicaid, but once approved, I have always had top notch doctors at Oregon Health and Science University (OHSU) in the field of TN pain management, and neurosurgery. My primary care doctor is at another hospital, but she went to medical school and did her Internal Medicine residency at OHSU and is fully supportive in my treatment decisions. Dr Kim Burchiel, who heads the OHSU department of Neurosurgery, is considered one of the country's leading TN neurosurgeons. Thing, is I have as my neurosurgeon Dr Ahmed Raslan. I first had Dr Raslan, when he assisted on m first MVD as a fifth year resident, He is now a attending surgeon and I refuse to let anyone, but him cut on me. He knows well the many problems I have with surgery and goes above and beyond to make sure they did not happen again. I love his conservative approach, and fully trust he will do not harm. He has dedicated his life to working with TN patients, as both is mother-in-law and wife have TN, and he sees first hand what this disease does to people. While Dr Burchiel will not take my insurance, I still get the benefit of his knowledge, as Dr Raslan consults with him., I call that a win/win.
I often wish I had the money to fly people here, and take them up to the hill, (nickname given to OHSU, Long story.) I would gladly let people take my bed and I sleep on the futon, if it saved money on a hotel while here. Thing is I can't. :( I read many of the stories here and I find my heart breaking. Many people with good TN outcomes never come back. I come back with the hope that my story may encourage someone.
You are in my heart and prayers,
Diagnosed with TN: 1995
MVD Jan 2005
RfR Aug 20012
Repeat MVD and Internal Neurolysis Nov 5, 2013