Two weeks ago, I turned the electricity up to 3.40 volts on frequency B. The first thing Dr. Tolleson asked me yesterday was what frequency I had landed on. I told him I tried the two new ones he had programmed last time around (A being the low one, C being the high one), but nothing worked, so I went back to B – which he had left as the frequency and settings that I had come in on. He said, “I thought D was the one that I programmed as the same settings.” Seriously?! My reaction was, “D, really?! I could have sworn you said B!” He said, “Well, I could be wrong. I do make mistakes occasionally.” It turns out, I think he was right, but who knows for sure. I found where I had written down everything he told me the last time I saw him and I had written “A is low, B is the same and C is high”, but in his notes, he had written D is the same. As he quipped, “B and D do sound alike.” Haha.
He had me walk for him and he checked all the settings on my device. I told him how I had tried both new frequencies and then experimented with the amount of electricity in each of those frequencies, but nothing seemed to work. He could also tell from his device how I experimented. He showed me how I (unbeknownst to me) was within the same range of volts of electricity no matter what frequency I was on. He again explained to me that dystonia is tricky to treat. I explained to him my fears that I’m “not doing it right” when trying to treat symptoms or getting on the right frequency with the right level of electricity. He assured me that I’m doing everything “right”, or at least doing what he’s told me to do. I asked him, “What should I be looking for? If I have a bad day or a bad week should I consider changing frequencies or the amount of electricity I’m giving myself?” He said for a bad day, he wouldn’t consider changing anything, but a bad week, yes. I told him how when I get nervous about walking (i.e. in a parking lot – with nothing to hold on to or catch myself with), I walk stiff-legged. He asked if I was using any assistive devices. I told him I wasn't although I know people who want me to use them! I may be just a little stubborn. The goal is to get my leg muscles to loosen up. I told him that I walk stiff-legged sometimes because I feel like if I bend my knee correctly, my leg will spasm. It’s a never-ending cycle of either being too stiff or too spastic. I also told him that I fear that everything’s psychological – that I’m somehow making myself not walk correctly. To that he said, it’s not psychological; it’s definitely physical. (This was right after he had observed me walking.) He could physically tell that my foot and leg are still not relaxing enough. It felt so good to be validated. It is physical.
I told Dr. Tolleson that I’m doing better on this higher level of electricity. He asked what I meant by "better". I tried to explain it to him. The muscles in my leg are looser – not as stiff and I can stretch out my foot flatter without it turning in so much, but then again, it's still not enough (at least for me and I think probably for him too). He asked if I ever felt that I had gotten to the "sweet spot". I told him I thought I had, maybe. It was between the time that I last saw him at Vanderbilt (January 30, 2017) and when I had surgery on my toes (May 2017). That frequency and level of electricity seemed to work the best, but then I started having problems with my toes, hence the toe surgery and then I got worse after the surgery. But then again, maybe it wasn't as good as I remember. No setting has ever been "perfect". You’d think it might be as easy as going back to that frequency and level of electricity that I felt was the best, but it’s not. Since then, he’s programmed over that information with new settings and frequencies. I can’t just go back to my blog and see where I was at and change it. It gets very confusing and convoluted trying to remember all the frequencies and levels I’ve been on, because in a little less than two years post-op, I’ve been on a lot! Dr. T. acknowledge that as well. We’ve been testing and experimenting a long time and yet – there’s still more that can be tested and experimented with! Dr. T. has everything recorded and documented, but it’s still a ton of information. Sometimes, knowing that there are still lots of options and lots of frequencies and settings to experiment with, is a little overwhelming and sometimes it gives me hope. Yesterday after the appointment, I was somewhere in the middle of being overwhelmed and being hopeful, but today, I'm not overwhelmed; I'm only hopeful.
There were two options that Dr. Tolleson gave me yesterday. One was he could adjust the frequencies and settings that I am on now. The second option was that we could start from scratch. Without hesitation, I blurted out, “Let’s start from scratch!” Really?! I just want to walk. I couldn’t believe that I opted to start from scratch. But, I do want to start there. Like, really, really want to. There are more options. It gives me hope. It gives me something else to fight for. What does starting from scratch mean? Well, I’m not entirely sure, to be completely honest. But, after some discussion with Dr. T. it’s what I feel like I should do.
The plan for now is to stay where I’m at right now (frequency wise) unless I have a bad week (fall-wise). Then I can try Frequency D. I can still go up or down electricity wise in each of these frequencies. I’ve scheduled another appointment with Dr. Tolleson for November 30. It’s an hour-long appointment where he will go in-depth on the frequencies and electricity levels, see how I react, watch me walk and see what needs to be adjusted – that sort of thing. My understanding is that he’ll wipe out all the frequencies and settings that he’s programmed as of now and start from scratch.
I’m continually amazed at how one “simple” stimulator in my brain can have so many options to experiment with. I guess that’s why the initial surgery took 3-4 hours. They did test a ridiculous amount of areas all so that I wouldn’t have to go through the actual surgery part again, but so that I and the doctors could be given option after option until we hit that “sweet spot.” The neurosurgeon told mom and I that no two people have the same “sweet spot”. It’s annoying and awesome all at the same time. We’re all unique!
I had a good week this past week. No falls! My dad even commented that I seemed to be walking better. I'm very, very thankful for good days. Some days and some circumstances are better then others, but isn't it like that for everyone? I'm very, very thankful that, God's Got This!
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