A Journey for Hope

I was unable to sleep as thought after thought went through my mind. “Would he say that I have trigeminal neuralgia? Would he tell me that I have nothing at all and that I should see a psychiatrist? Would he tell me it is something in between both of those thoughts?”

When the alarm finally went off at 4:30am on August 8, 2010, I was ecstatic as my husband and I began our journey. A journey that started almost eight months ago that has left me in anguish and my husband in complete frustration. We were headed for answers to our many questions. We were headed to a possible solution to rid me of pain. We were headed off to Baltimore, MD for an appointment with one of the most famous names in neurosurgery.

Upon arriving in Baltimore we tried to make a “vacation” out of our five-hour drive by visiting the National Aquarium, touring the Inner Harbor and the historic boats that were docked there and trying to find Baltimore’s best crab cake. In between all of the tourist attractions I couldn’t help but think, “Is this going to be the appointment we have been waiting for, where we would finally hear of a treatment plan? Or, is this going to be a trip where we look back and say, ‘At least we were able to have a mini-vacation!’” I worried every minute of that trip, hoping that Tuesday (August 10, 2010) would be the day that ends my misery and can allow me to focus on what lies ahead.

When out to lunch, the day before my appointment, I couldn’t help but notice a newlywed couple sitting at the end of the bar. I offered them a warm congratulations and continued to eat my mashed potatoes with a warm glass of water, through a bendable straw of course. While they tried not to stare at me I could tell that the noticed my ear plug sticking out of my ear (who couldn’t miss it? It was bright blue!) and the water that was dripping down my face as I did my best to eat my lunch. Then, the kind woman asked me, “So, what brings you to Baltimore?” Well before I could chime in my loving husband shouted, “We wanted to visit the Inner Harbor. Plus, she has a doctor’s appointment tomorrow at Johns Hopkins.” He is always quick to come to my defense and, not knowing if she was going to say something about my ear plug or peculiar “lunch” he tried to explain the reason for our pilgrimage. The woman went back to enjoying her champagne with her new husband but I could tell she wasn’t intimidated by my husband’s response and rather curious to know more. She then went on to explain how she is an ultrasound technician at a nearby hospital and was wondering who I would be seeing in the “ENT department.” I had to then explain to her that I was experiencing some nerve damage on the left side of my face and that the ear plug was only in to try and eliminate any loud noises which trigger the pain. I then explained that I would be seeing a doctor in the neurosurgery department and, of course, she wanted to know who I would be seeing there. I explained that I would be seeing Dr. Ben Carson and before I could say anything more she gasped, “Ben Carson? Ben Carson! BEN CARSON!!!!” I confirmed that is the doctor I will be seeing and she went on to kindly “yell” at her husband for about an hour for not knowing who the great Ben Carson is.

Well, if I wasn’t nervous and anxious enough about my visit I sure was now. This woman didn’t even work at a Johns Hopkins, yet she knew of the man I was scheduled to see the following morning.

After all the exciting things we did on Monday, I was hoping I would be able to fall asleep (and stay asleep) until the alarm sounded at 6am the next day. Boy was I wrong! When the alarm finally went off I jumped into the shower and packed the car and off we were. After driving through the Inner Harbor of Baltimore we drove around and around and around and ... well, you get the picture ... around! We got lost but eventually found the amazing red bricks of Johns Hopkins Hospital and Medical Campus. Upon checking-in I anticipated waiting in the waiting room for awhile until I was called back to meet the Dr. Carson. Instead, I was given a sheet of paper with directions and told to follow them for my appointment. I didn’t think anything of the directions I was given as I assumed I just arrived at the wrong location as it was a feat just to get to the hospital. After following the directions that were something like, “Go back down the elevator to the first floor, Take a right and go up the long stairs, then the short stairs, around the corner and past the gift shop, up some more stairs and then take the elevator to the 8th floor” I finally arrived to my doctor’s office. No, I don’t mean the room where I will be greeted with a receptionist and a variety of magazines to choose from. I literally arrived in his office! I was taken into the “exam room” which was really just a conference room. I was then greeted by Dr. Carson’s WONDERFUL physician’s assistant, Ms. Carol James, and given a thorough examination and explained my history that led to me being in their office that day. She then explained that she would go look at my MRI and be back in a few minutes.

About five minutes later I looked up to see a man that looked so familiar to me. A man that I have read so much about. A man whose book was turned into a Hollywood film. A man I have been longing to meet. I thought he would be just dying to know more about me and my story but instead he looked over to my husband and began questioning him. I was confused for a few minutes and almost blurted out, “Hey, Dr. Carson, I’m the one who has trigeminal neuralgia!” but then I stopped and listened to the questions He was asking. “How is she tolerating the pain? Do you think the medication is helping her? How does she act on the medicine?” I guess they were all important questions because he turned to Ms. James and said, “I’ll do a Glycerol Rhizotomy” and he then explained the procedure, stood up and shook our hands, and off he went in his full surgical regalia with mask. Those were the two words I have been longing to hear. To me, those two words were the beginning to ending my pain.

Ms. James went on to explain what the procedure entails and how this could be my saving grace before answering our laundry list of other questions and concerns. She was the most patient, educated, gifted, and loving medical professional I had met along my journey, and probably will ever meet in my lifetime. Just before we left she gave me a big hug and said, “Welcome to the family and hang in there hun because there is hope at the end of your tunnel.” And, for the first time in almost eight months, I truly feel that I found the place I belong (Johns Hopkins) that will make me become ME again. My “vacation” had, in fact, become the wonderful journey towards hope I’d been longing for!