Wednesday, May 20, 2015

MRI Results

Today I got some surprising news that rattled me a little bit, but I thought I might as well go ahead and blog about it, since blogging seems therapeutic for me.

Before I get into it, I have to say – Thank you, Jesus for answering my prayers about not having to wait to learn more about what’s going on: Dr. L.’s office called with the results of my MRI.

The results were, I'll admit, a bit shocking. I assumed (that’s my first problem – NEVER, EVER assume!) that all would be the same as it was in 2009 when I had my last MRI. Not quite. This MRI showed I have a cyst near the shunt. It’s just a cyst – not a tumor or cancer, they assured me, but still it’s unnerving.
The woman I spoke with said that she debated calling me with the results because she had yet to speak with Dr. L. about them. But she decided to call me anyway because if I had questions, she could ask Dr. L. for me. She’s going to get with Dr. L. and see what he has to say, ask him my questions and then call me back. The good news is she is also faxing my referral for deep brain stimulation to Vanderbilt today. She didn’t know if the cyst would prevent me from having the DBS surgery (again, something Dr. L. would have to speak to).
Another surprising result of the MRI was the fact that in 2009 the radiologist reported right side meningeal thickening and on the MRI done Monday there was absolutely no trace of that. I’m not really even sure what right side meningeal thickening means, but the fact that it was there in 2009 and is not there now is interesting.
A co-worker asked if I would have rather not gotten a call today about the MRI then gotten incomplete information. I can say, that I am very thankful for the call! I have been praying that I would know something soon (although I wanted to know about the referral to Vanderbilt, not a cyst on my brain!). Just this morning I was praying that I would hear something today and I did. I am so, so thankful. God answers prayer!
So now, I wait to hear back from Dr. L’s office and his take on this new (or maybe not so new) information. I will not worry until there's something legitimate to worry about. At least that's what I'll tell myself! And as I wait, I'll meditate on my life verse:
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. (Philippians 4:6 NIV)

Monday, May 18, 2015


Today I had an MRI of my brain done. It's not my first and it probably won't be my last. It went great (from my perspective anyway, I actually have no idea what the MRI says). After ten years and several MRIs, I guess I'm getting the hang of them.

Comparing the MRI I had done today to the very first one I had done - well, the comparison is like night and day.

First MRI: I opted to take medication to calm me down, which made me extremely groggy, but able to get through it without freaking out. I didn't know whether I was claustrophobic or not, but I did/do know that I have panic attacks, so I did NOT want to have one while getting the test done. My dad drove me home, and everything he said to me was the funniest thing I'd ever heard. I was so out of it, I couldn't figure out how to put my watch back on (which thoroughly entertained the nurse) or unlock my front door (which made Dad have to get out of the car and help me). I thought I could go back to work after having it done - ha! No way. I went straight home and fell asleep. I slept the entire afternoon away and straight through the night, only waking up in time to go to work the next day.

Today's MRI: I drove myself to get it done, and didn't take any medication to calm me down. I didn't freak out or have any panic attacks. I actually almost fell asleep! How does that happen?! The only thing keeping me from doing so was the thought that if I did fall asleep and accidentally moved, they would have to do the test all over again, so I stayed awake. I also drove myself back to work and worked a full day.

From someone who once had to have medication to get the test done, to almost falling asleep during it, I guess you can see that I've gotten pretty darn used to MRIs! For those that have never had an MRI (especially of the brain), it's an experience. They put this mask thing over your head and then send you in this tube thing (I know, my medical terminology is stellar!). Thankfully though, there's a mirror that you can look in and see the outside world, so it makes it 1,000 times less claustrophobic. It's super loud too - so much so that they give you ear plugs. It's a bunch of clicking and whirring noises. The MRI I had done today had to be done with and without contrast, which means halfway through the MRI Tech comes in and gives me an IV of contrast dye. Today's MRI only lasted about 35-40 minutes.

Now, I just wait. This is the part I HATE the most. I have to wait for the radiologist to read the MRI and then I have to wait for him/her to send the report to Dr. L. Then I have to wait for Dr. L. to make the referral to Vanderbilt for the deep brain stimulation. After that, I have to wait to see if Vanderbilt thinks I'm a good candidate. Then if they do, I have to wait for them to call me. Did I mention that I HATE waiting? But as a co-worker said today, God's in control and nothing will happen until the exact time it's supposed to happen. If you pray for me, please don't pray for patience. Because if you pray for patience, God might answer by making me wait more. :) Just pray that everything will be done in His time, and until then, I'll wait.

Monday, May 11, 2015

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.

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.