Today I returned to Vanderbilt. After a not-so-great day yesterday that resulted in some quick, unexpected changes, today turned out to be pretty darn good. Thank you, Jesus!
My appointment was later in the day (11:30am/12:30pm Eastern), and I gained an hour going there. This meant I didn't have to get up as early as I've had to in the past. I kept to my regular work-day get up time, got up and worked out on my stationary bike. This is both good for my body AND mind. ;) I also tried registering online to be a bone marrow donor. It turns out though that I'm not qualified since I've had brain surgery before - who knew?! :( Obviously, not me, but, at least I tried. I got ready and for once my hair actually did what I wanted it to do! It was just the right amount of curly. ;) My friend, Annie was gracious enough to give up her day off and go to Nashville with me. She picked me up just before 9:30am. We had a great trip over and by the time we arrived it was 61 degrees out. I'm glad I wore layers! We arrived with half an hour to spare, but what I love about Vanderbilt (at least the neurology clinic) is that they can usually get you in early and they did! We waited probably less than 5 minutes before we were brought back. I brought Annie with me because I could go to these appointments by myself, but it's always good to have a second set of ears. My blood pressure was again a little high, but I'm convinced it's because I get nervous. They should always take it after the appointment. ;) We were led back to the same room I've been in before and waited only a couple of minutes before there was a knock at the door. It wasn't Dr. Tolleson though. It was one of his residents, Dr. Nage. I had never met him before, but he was super nice, didn't wear a bow tie and had cool socks. ;) He asked several questions and asked how I had been doing. Somewhere in the conversation my aversion to walking in front of people (especially doctors) came up. He said that would come later in the appointment - ha! He did the neurological tests and then had me walk for him. I did, begrudgingly. I know that's why I go to these appointments, but it's seriously one of the most stressful things for me! I'm such a perfectionist that I want to go running into the appointment and be all healed, but it's a slow (sometimes excruciatingly slow) process!! Anyway, I walked for him and didn't fall. Mission accomplished - at least for the moment. He warned me Dr. Tolleson was going to want to see me walk too. Then he started looking at the settings on my deep brain stimulation device. He started looking concerned and I asked if everything was alright. He said it was, but I wasn't convinced. He completed his part of the exam and said he was going to go get Dr. Tolleson, fill him in on things and that they would both be back in a few minutes.
After a few minutes passed, Dr. Nage returned with Dr. Tolleson in tow. I don't know how we got on this subject, but bow ties came up. Both Dr. T. and Dr. N. are young and neither was wearing a bow tie but they both agreed that it is kind of a neurology thing. I told Dr. Nage that I thought he had cool socks and I told Dr. Tolleson that he had a cool tie on. Dr. Tolleson at first thought I said HE had cool socks on and immediately looked at his socks - which were just plain navy blue. I told him that I said Dr. Nage had the cool socks and he had the cool tie and he just laughed.
Dr. Tolleson, like Dr. N., wanted to see me walk. So, for the second time that day, I walked in front of doctors who were watching my every move and I DIDN'T FALL. I actually walked pretty well. I had little issues, but, by my standard, I walked pretty well. Dr. T. had me come back in the exam room and he did the neurological tests that Dr. N. had just done to see for himself what Dr. N. had reported to him. Then he got out (what I call) the master controller to my deep brain stimulator and started adjusting settings. I found out what Dr. N. was looking so perplexed about. It turns out Dr. N. didn't know how to adjust this one setting, so it wasn't giving him the data he was looking for. So, I really was OK! Dr. Tolleson played with all kinds of settings. He asked me if I felt things at different times that he adjusted. On one of these particular incidents, he asked if I felt anything and I said I didn't, but followed it up with, "but this is coming from the girl who told you last time (in October) that I felt something and you informed me that my device was completely off." He immediately laughed at that, because it was true! He adjusted more. At one point, he asked if I was frustrated. He said, "You look frustrated". I admitted I was. I just want it to work! After more adjusting, he had me walk again. I think I walked 3 times in front of the doctors in the hallway going back and forth and twice in the exam room itself. Maybe my fear is subsiding a little. What he was looking for was to see if my foot turned in while I walked or if it laid flat.
It was at today's appointment that I got to see even more of Dr. Tolleson's personality. We are more alike then I initially thought. I always thought he was very conservative when it came to how much electricity should be used and that he was very serious. I started to see a softer side of him at my appointment back in October and that continued at this appointment. I've ALWAYS liked him, but at the past two appointments (including today's), he's spent more time listening and adjusting and playing with frequencies. He's spent more time talking with me. Maybe it's the fact that I didn't die during surgery. Maybe it's the fact that every time I see him, I reiterate that I would do the deep brain stimulation surgery over again in a heartbeat. I seriously from day one have had no reservations. I'm happy (if somewhat frustrated at times!) with the results. I do remember him telling me in the very beginning of all of this that I'd be one of the youngest patients (if not the youngest) he would refer for deep brain stimulation if it came to that. It might also have to do with the fact that we are the same age. Maybe he had many reservations or wasn't sure how things would turn out - maybe that's why I got the sense that he was a serious, conservative type, but today - today I learned differently. I flat out asked him at the end of the appointment, if he were me, what would he do. He admitted that just like me, he wants things to be perfect. He said that if he were in my shoes he would be just as frustrated and impatient and he would probably skip to the highest setting and sit on it. See, I KNEW I liked this doctor!! :)
As the appointment came to an end, Dr. Tolleson started nervously laughing. He stopped and said he was sorry, but he'd had to say what he was about to say so many times within the past two days, that he knew what was coming. That made me a little nervous. Then he said no words no patient ever wants to hear (if they really like and/or trust their doctor). "I'm moving and therefore leaving Vanderbilt and I won't be able to be your doctor anymore." Complete devastation on my part. Complete. I seriously almost burst out crying. But then, then something miraculous happened. He said, "I'm moving to Knoxville." Wait. Did I just hear him correctly?! I turned to Annie and then back to him and asked, "You're moving to Knoxville?! That's where I'm from!" Talk about one extreme to the next. I went from complete devastation to complete elation. I think he'd actually forgotten for a second that I came from Knoxville to see him. He turned to Dr. N. and said that this was the opposite reaction of what most of his patients reactions had been to his announcement over the past couple of days. He said this is a good reaction! I immediately asked where he was going to be. The news just got even better: The University of Tennessee. My first reaction to this was, "My brother works there in the ER!". Then I asked, "Well, can I just follow you?" He said that I was more than welcome. I was also more than welcome to continue at Vanderbilt with a new doctor. This was a no brainer for me: I'm following him. He's moving the last week in April and will start at UT the first week in May. He said he was going to suggest that I see him (or a doctor at Vanderbilt) in 3-4 months. He said that if I did decide to follow him that I might not get to see him until June or around there because he'd probably need a month to get settled. That's fine by me!!
I do have a new plan. I couldn't go any further up in the electricity on Frequency C then I already was, so he added 6 more "notches" that I can go up in electricity on. He said to go up a notch every week. But the difference this time is for two weeks he wants me to seriously document everything. When I'm having a good day, when I'm having a bad day, what I'm doing when I'm having difficulty, what time of day I'm having difficulty, EVERYTHING. I must document everything. Then in two weeks, I'm either to call him or e-mail him. He said he'll gain much more insight this way and he'll be able to tell me if I need to go up, down or stay where I'm at. So that's the plan. He also reprogrammed the level I was at when I walked into his office this morning, in case I need to go back to it. It's Frequency D. But for now, I'm on the "new and approved" Frequency C.
Tonight, I'm thankful. I'm exhausted, but so very, very thankful. Yesterday was not a good day, but JOY came in the morning today and tonight I'm thankful. As I've always said (and yet have had to consistently remind myself) and known and continue to say and know: God's Got This!
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