I was asked to share, what has been a 18 year TN journey, that after all this time, I am now finally pain free.
How do I put into words, the figurative bloody knuckles I end up with knocking on doors looking for the proper care? Having grown up in a family of doctors ( ear, nose and throat.) I know the ego well. A long the way, I fired a number of condescending doctors, telling them if they did not have a sick patient like me, they would not have a job, and then went out the door. How do I put into words, the depression I sank into that was so deep, if it were not for my kids I would have gone over the rail of a 12 story bridge, in a desperate attempt to make the pain stop. Knowing I could not do that to my boys, I knew I was going to have to fight. I often felt like I had gone many rounds with a mixed martial arts boxer!
Still, I kept knocking on doors. At the time of my first Micro Vascular Decompression surgery, I was getting my care at the Portland Oregon Veteran's Hospital, ( Navy Vet.) When I asked the neurologist assigned to my case for a referral to neurosurgery, he refused to write it. I sat on the edge of my chair, pointed a finger at him , and said in a very stern voice, "I know what my rights are in this situation. Just because I am wanting referred to neurosurgery does not mean I am agreeing to surgery, I just want to learn what my options are, now go write the blasted thing." 2 weeks later I was sitting across from Dr. Jorge Eller. Little did I know he would become my biggest advocate when it came to my TN care, at the time. The neurologist's last good-by was a non-complaint patient note in my chart, but as I did not care what he thought, I never filed to have the note removed from my chart. I asked my primary care doctor to do my medication follow up and she did for 3 years.
It is often said doctors and nurses do not make good patients. I think they should include family members as well. I hate hospitals. Always have, even to this day. This is from growing up hearing too many stories. That and having infectious disease doctors as friends. Personally, hospitals gives me the willies This was a major driving factor in why I waited 3 years from the first time I met Dr. Eller until I decided to go ahead with my first MVD. I still met with him in the mean time, to update him on my situation. After a horrible TN attack, I went back. I am not sure what look I had on my face. Just that he came into the room, closed the door, and took one look at me, and stopped. I looked up at him and said, " I can not do this anymore. I am ready to go ahead with the MVD." It can take 2 years or longer to have what is considered elective surgery done at Veteran's Hospitals. When Dr Eller told me and I quote, " I will fight to make sure you get the surgery you need." Here is had the head of the neurosurgery division putting his professional reputation of the line, to make sure my MVD would happen. 6 weeks later I was in surgery. What was found startled everyone. That will be the start of part two of the story.