Keeping Hope Alive

I am so thankful for Jesus and for His renewing of my spirit. Just when life seems to get tough, he throws me a rope and keeps hope alive!

This morning was my appointment with my new neurologist, Dr. L. To say I was a little nervous, is probably understating how nervous I really was by like 1,000 times. Don’t ask me why, I just was. I was so thankful that Mom offered to go along with me. She’s been my ever-faithful companion to neurology appointments.

One thing I wasn’t expecting – Dr. L. met me at the door and walked me back to the exam room. Mom later said that she thought he was a nurse at first because she’s never seen a doctor actually meet a patient at the door. But it saves time, if you think about it. In one fell swoop, he could watch me walk and get my history without me having to repeat what I would have just told the nurse. Efficiency, oh how I love you! :) But don't get me wrong, nurses are wonderful and needed! It's just that in this instance, I was super impressed that he came and got me and walked me back.
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I gave Dr. L. my history and he looked at my MRI (which was taken back in 2009). It’s always good to have Mom there because she fills in things that I forget to mention, she can answer questions I have no idea about (like those about my birth, when I started walking and when I was a child) or she corroborates my accounts of things. I felt like I was being rude by talking the whole time, but I guess he did need to know everything! Once he was caught up on everything, Dr. L. performed the routine neurological tests that every neurologist does. I should know the names of these by now, but I don’t! Most have to do with reflexes and coordination. Then we started talking about what could be done going forward. He went over the medications I’m taking now, those I’ve taken in the past and what I've had done in the past (physical therapy, BOTOX injections, shunt surgery…). He said there were a few options: we could add different medications, do physical therapy with a therapist that works only with neurological patients (why hadn’t I thought of that before?!), or try deep brain stimulation. He asked if any of my other doctors had ever mentioned deep brain stimulation (DBS) to me and I told him no. But my ears perked up, because it wasn’t the first time I’d heard of DBS.

Deep Brain Stimulation: It both scares the living daylights out of me and intrigues me all in the same thought. I had first heard of it years ago. When I first started having neurological symptoms, I self-diagnosed myself with every weird, fatal, never-heard-of-before and rare neurological disease I came across (maybe I shouldn’t spend so much time watching medical shows!). And because of this, I also researched and read about every possible treatment known to man. So, I had heard of DBS. I had even done some research on it, but after the shunt surgeries both failed, I decided to wait on bringing it up to any doctor because back then (6 years ago), it was just in its infancy of being a treatment for dystonia. I'm not going to lie, I decided to let others go before me before I tried it! None of my doctors ever brought it up as a treatment either, so I didn’t press the issue. I think I may have mentioned it once to one of them, but nothing came of it. But then there was today: six years down the line and a new doctor. Dr. L did mention it as a treatment. I asked him more about it. He said that it has been found to help dystonia patients significantly. He also said that the results of DBS on dystonia patients are a little different then they are on Parkinson's tremor patients. With a Parkinson’s tremor, the tremor instantly goes away when the surgery is performed. With dystonia he said it takes a few weeks/months after the surgery to see the benefits. I asked him if I’d be awake during the surgery (as I had seen in videos of DBS and on TV) and his answer was yes. This is because the doctors would have to ask me questions and make sure the probes were in the right places. Kind of cool, but also kind of scary.

I told Dr. L. I was up for anything – medication, physical therapy, surgery – whatever. I’m ready to take on this battle again and not just settle for having to walk with a walker my entire life. I needed a little break, I think, after the failed shunt surgeries, but now, I’m full steam ahead ready to fight again. Don’t get me wrong. The past 6 years have NOT been a waste. They’ve been a huge growing field for me. I loved my previous neurologist and miss him greatly. He was very insightful and I thank him for everything he did for me. The truth is, it wasn’t until this past year that I fully accepted dystonia as a diagnosis, that there was something wrong with me and the fact that I might never get any better than I am today. But I think I had to accept that as fact to be able to move on and have the energy to fight again.

What Dr. L. did for me today was give me hope. Hope that I can walk again without assistance. Hope of new procedures and surgeries. Hope of new discoveries and innovations. Hope. I had absolutely no expectations for today’s appointment and I was just blown away by the outcome of it (in a good way!) and the hope I was given.

So the plan for now is to add another medication to my routine. If the medication works, great. I’d stop there. If it doesn’t help, then I may also try more physical therapy. I also have an MRI set up for next Monday morning. The MRI is for the “in the meantime”. Meaning that, Dr. L. is referring me to Vanderbilt for the DBS and Vanderbilt needs a new(er) MRI for the referral. If the medication and the physical therapy don’t work and I do decide to go forward with the deep brain stimulation, the ball would already be rolling on that. Then I wait to hear from Vanderbilt and we go from there. I feel truly blessed to have met and gotten in with Dr. L. I see him again in December. I also have to thank my friend, Dave for giving me his name and saying that I should go see him. To go from thinking “this will be the rest of my life” to hope…it’s a beautiful thing and I'm truly excited about what the future holds.