My biggest regret

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

Sarah, I am not as active on the blogs as I should be but do try to come back periodically and give an update. I had my MVD in March 2012 and so far I as still pain free. There is not too many days that I don't think about it though. I still get some minor ear pain but not enought to need to take any medication or anything for it but it reminds me of when my TN first started. I just pray that it doesn't come back. I just wanted to say that I think it is great that you stay so active in the blogs!