What a day yesterday was. It started about 4am when I was awakened by the massive thunder and lightning going on outside. I was able to eventually go back to sleep, but I still got up early and exercised. I picked Mom up at 8am to begin our road trip to Nashville. I had to laugh – we were dressed alike!! I guess that phrase “like mother, like daughter” applies in this situation. I mean, how does that happen? We don’t even live in the same house! We were both dressed in coral colored sundresses.
We had a non-eventful drive and nice conversations. I could tell I was nervous though because I kept biting my nails (on the drive home, I switched to twirling my hair). Oh well. We arrived at the doctor’s office a half hour before my appointment time, but I was signed in and taken back almost immediately. Efficiency – I love it!! The medical assistant weighed me and took vitals. My blood pressure was a little high (see, I knew I was a little nervous!). She then got all of my information entered into the computer and then the doctor came in.
This is where I don’t know whether to be flattered (in a weird kind of way) or frustrated. The doctor came in and said that he had read through and studied my file. His diagnosis: I am unique and complicated. I’m not your run-of-the-mill dystonia case. He said he’s not even convinced I have dystonia. He asked Mom and me if I had ever been diagnosed or tested for Wilson’s disease. I know I have not ever been diagnosed with it, but I couldn’t tell him for sure if I have ever been tested for it. I know at the Mayo Clinic they took blood and ran different tests, but I’m not sure if they ruled Wilson’s disease out or not. He asked if I could get those results for him. I said I would. In the end, I ended up signing a release that Vanderbilt was going to fax in to Mayo, requesting that Mayo send Vanderbilt my results. The only place I’ve ever heard of Wilson’s is in an episode of House. Last night, after I got home, I tried to find the episode, but didn’t succeed. I was also extremely tired, so I gave up looking for it. I did find it today. It's in season 1 and the episode is titled "The Socratic Method". Anyway, the doctor explained what Wilson’s is. It is a genetic disease in which both parents have to be the carrier of a certain weak/faulty gene. It’s a build-up of copper in one’s system. The doctor was adamant that he rule Wilson’s out first before going any further with my case. He said if I do have it, I need to start treatment for it right away. Treatment is to take zinc. He said that Wilson’s is called the great masker. There are so many symptoms of the disease that it’s usually masked and people with it are diagnosed with other diseases first. Come to find out (when I Googled it that night at home), it's fatal, if not treated. To which one of my brothers (who shall remain nameless!) said, “Life is fatal”. Thank you so much for that reminder – haha!
The doctor went on to do a physical exam in which he made me walk for him (which I hate!) and he did all the other neurological tests. One of those tests was to pinch my fingers and toes. He did this several times so I asked what he was looking for. He said that when he did that, my thumb was supposed to turn inward and mine didn’t. Again, I’m unique and complicated. Mom, at one point, told him I didn’t walk until I was 18 months old and I never crawled – I just got up and walked. He said that his son didn’t walk until 18 months either. That made me feel a little better. He said that I seem to have symptoms of both dystonia and spasticity. If I do have dystonia, he thinks it’s secondary and he said that unfortunately, deep brain stimulation doesn’t work as well on secondary dystonia or spasticity. He said the treatment for dystonia is BOTOX. There are three different kinds – two of which I‘ve already tried. I’ve got an immunity to Botox A and Botox B didn’t work (or maybe it’s the other way around, but either way, I’ve exhausted two of the three options). He also talked about a Baclofen pump. Baclofen is a drug used to treat dystonia and the pump would deliver it straight to my spinal cord. So, that’s an option. He said that if he rules Wilson’s out and I still want to pursue the surgical option (deep brain stimulation), he would send me on to stage 2 where I would meet with a physical therapist and they would video tape me walking and I would take a motor-function test. I would also have to have a psych test. If those tests came back OK, then he would bring my case before all the other neurologists in the hospital and they would discuss it and determine whether I was a good candidate for DBS or not. He mentioned that my case would take longer to discuss because I’m so unique and complicated. Again, should I feel flattered by that? Mom said later that at least I’m unforgettable.
Mom asked me on the way back from Vanderbilt what I was going to blog about. I told her then that I wasn’t sure because I still had to process everything. I was NOT expecting to get yet another diagnosis. That threw me for a loop. But one good sign was that I didn’t cry all the way back to Knoxville, which I’ve done at every other consultation. That’s a sign of growth, right?! As we were driving back, we went through Wilson County. Is that a sign?
When we got home, I stayed at Mom and Dad’s for supper. As Mom prepared it, I Googled Wilson’s disease. Whether or not that was a good thing, is debatable. However, the more I read the more convinced I was that maybe I do have it. Mom asked what my gut reaction was and I told her at that time that I felt like I didn’t have it. I just couldn’t believe that Mayo wouldn’t have tested for it and ruled it out. But, the more I read (from Mayo’s web-site as well as the NIH’s website and a Wilson’s disease website), the more I started piecing bits of my life together. Things I (up to this point) never thought of as related started to jump out at me. In the process of Googling all of this, Dad came home and he also started Googling it. Then all of the sudden he said that his grandfather died of cirrhosis of the liver, but he never drank. After a few minutes, Mom remembered that her grandfather also died of cirrhosis of the liver and he too never drank. Could it possibly be that both of my parents are a carrier of this weaker gene? Wilson’s effects the liver. I’ve been told within the past couple of years by doctors that they think I have a faulty enzyme within my liver which causes medication not to be absorbed in a normal way. Basically I have a rapid metabolizer gene and I have to end up taking a higher dose of medication (whatever that might be) to get the same results of a person taking a normal dose. Wilson’s also manifests itself in both neurological and physiological symptoms. Well, I have panic attacks and anxiety and nervousness. I had them since I was about 10. And the neuro symptoms started when I was in my mid 20’s. As my Mom said, there’s nothing that we’re reading about that excludes me from having it. So, maybe I do, maybe I don’t. I don’t want to get excited thinking I have this though, because in the back of my mind, I again go back to when Mayo did blood work and I highly doubt that they would have not ruled it out.
So that’s where I stand now – waiting (my least favorite thing to do!). I have to wait for Mayo to send the lab work to Vanderbilt and then for the doctor to study it. If Mayo didn’t do the tests for Wilson’s (which, again, I highly suspect they did), then the Vanderbilt neurologist will order that I get it done. He said that also a 24-hour urine collection test would be a good indicator, so he may order that as well. If it’s Wilson’s I’d be treated for that, which would mean probably no deep brain stimulation. If it’s not Wilson’s he’ll send me on to stage two in the deep brain stimulation process.
It's a lot to comprehend. Again, I don't want to start thinking in one direction (Wilson's) only to get a call in a few days to say that Wilson's was ruled out. I don't know what the future holds, but I do know Who holds my future. So again, I'll have my favorite Bible verse on repeat in my brain: "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God." Philippians 4:6
Wednesday, July 1, 2015
Saturday, June 20, 2015
10 Days
In 10 days I have my initial DBS (deep brain stimulation) appointment at Vanderbilt. Last night I got a packet of information from Vanderbilt on what to expect (along with paperwork to fill out and directions to the clinic).
I spent my Friday night curled up on the couch, first reading my newest edition of People and then reading through all the information. :)
To satisfy the media nerd in me, there was even a DVD, which of course I watched.
I've been excited as well as nervous about this upcoming appointment. I guess you could say it's actually a nervous excitement - yes, that's what it is. I always get nervous before I see a new doctor. But I'm excited too. I so want to be able to walk without a walker or a cane again. Maybe this is the answer, but then again, maybe not. I just have to wait (which I'm not very good at!) and see what the doctors say.
Speaking of doctors, I "met" my Vanderbilt DBS neurologist through a biography page that was sent in the packet. I'm pretty sure we're the same age. He graduated college the same year I did and then went on to medical school. I guess I'm getting to that age where doctors can be my age - haha!! My younger (by 7 years!) brother is a doctor, so YES, I'm at that age ;)
I completely understand that I may not "get" to have DBS. (I put "get" in quotes because, if I have it, it's not going to be a picnic in the park and it won't cure me. It is, after all, brain surgery and there are risks associated with it.) I do want to be able to walk without a walker, but God may have other plans for me and DBS may not be His plan. Even if I have the surgery, it may cause other problems, or not help me in any way (I've been through that before with the shunt.) So, if I hear "you're not a candidate", I'll take it as a sign from God that DBS is not for me. I have to say that in many ways I have been blessed because of the walker and the dystonia. There are people I have met and things I've gotten to do and I have dystonia to thank for that. But, to be able to walk assistance-free: I can only imagine! If you can walk like that now, please don't take it for granted!!! I can honestly say, I probably did. And now walking assistance-free is something I dream about.
I am resolving in the next 10 days to NOT worry or be anxious about anything (which I am very prone to do!), but in prayer and petition, with thanksgiving, I will present my requests to God. (Philippians 4:6) I'll let God determine the path my feet shall take and I'll rest in the knowledge that He knows what's best.
I spent my Friday night curled up on the couch, first reading my newest edition of People and then reading through all the information. :)
To satisfy the media nerd in me, there was even a DVD, which of course I watched.
I've been excited as well as nervous about this upcoming appointment. I guess you could say it's actually a nervous excitement - yes, that's what it is. I always get nervous before I see a new doctor. But I'm excited too. I so want to be able to walk without a walker or a cane again. Maybe this is the answer, but then again, maybe not. I just have to wait (which I'm not very good at!) and see what the doctors say.
Speaking of doctors, I "met" my Vanderbilt DBS neurologist through a biography page that was sent in the packet. I'm pretty sure we're the same age. He graduated college the same year I did and then went on to medical school. I guess I'm getting to that age where doctors can be my age - haha!! My younger (by 7 years!) brother is a doctor, so YES, I'm at that age ;)
I completely understand that I may not "get" to have DBS. (I put "get" in quotes because, if I have it, it's not going to be a picnic in the park and it won't cure me. It is, after all, brain surgery and there are risks associated with it.) I do want to be able to walk without a walker, but God may have other plans for me and DBS may not be His plan. Even if I have the surgery, it may cause other problems, or not help me in any way (I've been through that before with the shunt.) So, if I hear "you're not a candidate", I'll take it as a sign from God that DBS is not for me. I have to say that in many ways I have been blessed because of the walker and the dystonia. There are people I have met and things I've gotten to do and I have dystonia to thank for that. But, to be able to walk assistance-free: I can only imagine! If you can walk like that now, please don't take it for granted!!! I can honestly say, I probably did. And now walking assistance-free is something I dream about.
I am resolving in the next 10 days to NOT worry or be anxious about anything (which I am very prone to do!), but in prayer and petition, with thanksgiving, I will present my requests to God. (Philippians 4:6) I'll let God determine the path my feet shall take and I'll rest in the knowledge that He knows what's best.
Friday, June 5, 2015
A Deep Brain Stimulation Appointment
I have a deep brain stimulation appointment at Vanderbilt set for June 30 at 10am. I got a call from Patricia at the Vanderbilt DBS clinic. She's my coordinator now. She said she'll be with me every step of the way and I can call her if I have any questions. She explained what was going to happen. June 30 is just a consultation with a neurologist. She said I'll get to know him and he'll get to know me. He'll evaluate my symptoms and he'll be the one to see if I'm eligible to go forward with DBS. IF (and that's a big if right now) he thinks I meet the criteria to have DBS, I'll have what they call a pre-op evaluation. Patricia said that this consists of two appointments that can normally be done in one day. One is a motor skills evaluation and the other is a neuro-psychological evaluation. IF (another big if!) those appointments pan out and the doctors doing the evaluations think that I'm a candidate for DBS, the next step is for my neurologist to bring my case before the rest of the neurologists in the clinic. They meet every month on the 1st to discuss their patients and see who actually qualifies for the surgery. If they all agree that I am the "perfect" candidate for the surgery, then the surgery date is set.
Back to Patricia for a minute. At the end of our call, she said, "I see you have a birthday next Friday - happy birthday!" She mentioned that her birthday was on June 8 and that we are the same age. I wished her a happy birthday too. I found it funny though because she said that technically she's a few days older than me. I said I didn't mind because I'm the oldest in my family. She said she was the baby in her family. So we got to swap roles for a minute. :) She seems really sweet and I'll get to meet her on June 30.
I have to say that I am SO HAPPY that I made it through the first hoop - getting an appointment at the clinic. But, it's going to be a long ride. I'm kind of nervous about the whole thing, because I have a feeling it's going to be like I'm in school again. I have to "pass the test" every time and I'm a horrible test taker. But, one step at a time...if I get through the initial consultation and the neurologist feels like I'm a good candidate, then I'll worry about the next step. Who know? I might not make it through the consultation. He may say I don't qualify. So there is no need to worry about something that may not even happen.
I'm excited about the future and what it may hold. I'm trying to be realistic though and not get my hopes up too high. I do know who holds my future in His hands, so I'll rest in that. Whatever may come, I know the Lord will fight for me. He always has my best interests in mind.
Back to Patricia for a minute. At the end of our call, she said, "I see you have a birthday next Friday - happy birthday!" She mentioned that her birthday was on June 8 and that we are the same age. I wished her a happy birthday too. I found it funny though because she said that technically she's a few days older than me. I said I didn't mind because I'm the oldest in my family. She said she was the baby in her family. So we got to swap roles for a minute. :) She seems really sweet and I'll get to meet her on June 30.
I have to say that I am SO HAPPY that I made it through the first hoop - getting an appointment at the clinic. But, it's going to be a long ride. I'm kind of nervous about the whole thing, because I have a feeling it's going to be like I'm in school again. I have to "pass the test" every time and I'm a horrible test taker. But, one step at a time...if I get through the initial consultation and the neurologist feels like I'm a good candidate, then I'll worry about the next step. Who know? I might not make it through the consultation. He may say I don't qualify. So there is no need to worry about something that may not even happen.
I'm excited about the future and what it may hold. I'm trying to be realistic though and not get my hopes up too high. I do know who holds my future in His hands, so I'll rest in that. Whatever may come, I know the Lord will fight for me. He always has my best interests in mind.
Tuesday, June 2, 2015
Weekend Fun
I had such a wonderful weekend this past weekend, that’s it’s taken me until Tuesday to blog about it!
It all started on Friday with a call from Dr. L’s office. I’ve been approved for a consultation on deep brain stimulation at Vanderbilt! I am so excited about this potential treatment, but at the same time I don’t want to get my hopes up too high. I might not even be a candidate for it, but at least I’ll get an appointment to see if I am. Dr. L’s office said that Vanderbilt should call me within a few days to set up an appointment.
Saturday was the Garth Brooks concert. It was awesome, epic and so much fun!!!! It was everything I thought it would be. Mom and I had special shirts made by friends of ours and we felt like rock stars. Seriously! Every person we walked by was super impressed by the shirts and wanted to know where we got them. Here’s a picture of us:
I went over to Mom and Dad’s house before the concert and my niece was there. She’s 11 months old today and she was mesmerized by the lights on our shirts. She kept looking at them and touching them. It was so cute to see her reaction to them. Mom and I were going to go to a Retropolitan craft show and out to eat before the concert. Halfway to our destination, I realized I forgot my handicap car tag (Mom was driving us in her car). So we had to circle back and grab that. By the time we got back downtown it was about 4:30pm. The concert started at 7:30pm and the doors opened at 6pm. We went to the craft fair and then to Sweet P’s (a BBQ joint). It was a great place to eat. We got one plate and split it. We had the brisket (I’d never had brisket before) and I went all in and got the macaroni and cheese. This was NOT a calorie free or friendly meal, but it was so good!
After dinner we headed on down to the concert. Parking proved to be difficult. I had bought a premium parking ticket ahead of time, but finding where “Staff Lot 5” was proved to be our challenge. It would have been easy to get to if streets weren’t closed and people weren’t giving us the “wrong” directions (telling us roads to go down that were blocked off). I think it took us around 10-20 minutes to find where we were supposed to park, but once we did – we had an AWESOME parking spot. It was in between the arena and the parking garage. We found out that there were only 15 parking spots in that area. It was right across the street from the door to the arena! It was well worth the money (in my opinion). We got inside the arena and everyone we passed pointed out and commented on our t-shirts! Mom bought me an official Garth Brooks tour T-shirt and we went to our seats, only to find a few minutes later that we were in the wrong section. We moved over one section and I think we had better seats there anyway! We were an hour early – not sure how that happened! We took selfies and pictures of the stage and people watched until the concert started.
I was so excited, I could hardly stand it!! We saw a couple from church a few rows down from us and talked with them for a while. Then the concert started. It was awesome!!! Garth did not disappoint. That guy has so much energy and enthusiasm and heart. It was an epic concert!!!! I had a blast.
When it was all over and done with, I asked Mom if we could wait a few minutes and let the crowd die down some before we left the arena. We sat back in our seats and were again complimented over and over and over on our t-shirts by those filing out of the arena. When we finally got up to leave we walked out and in the hallways of the arena, people still stopped and commented on our shirts. These two girls were in line to meet one of Garth’s back-up singers and they pointed at us and said “we were sitting on the opposite side of the arena from you and we saw your T-shirts!! We were wondering if we’d get to see them up close. We LOVE them!!” I was SO happy to hear that they saw them across the arena. Mission Accomplished!!!!!!!!!! I SO hope Garth saw them from the stage. It was an awesome-I’ll remember it forever- night!! I am so blessed to have spent it with my mom. She obliged me and wore her t-shirt with pride, even though I know she doesn’t like to wear t-shirts. She humored me and wore it anyway. She also bought me shorts to wear with it. They were as epic as the shirts because they were metallic silver and I’m pretty sure I was solar powering the sun while wearing them. I thought, I’m already wearing the shirt, so I must go ALL THE WAY and wear the shorts too. It was a “go big or go home moment”! The Garth Brooks concert was an early birthday gift from Mom and Dad and I had the absolute BEST time. I’ll always remember it and cherish it.
Sunday, the fun continued. After church (which was great!), Dad and I headed out to a Smokies baseball game with members from our church. It was our church’s “event of the month”. The only problem: rain! It poured (and by poured, I mean it was a deluge!!) in Knoxville. We had to go to Sevierville for the game and by the time we got there it was still raining, but not as hard. The game was rain delayed for an hour, but then it was under way. I loved spending time with Dad and others from church. I’m not a huge sports fan (what’s weird is that I LOVE sports movies, but can’t really stand to watch actual sports except figure skating (and YES that is a sport), and the occasional UT football/basketball game), but it was really fun. I liked my “Dad and Stephanie” time the best though. I told him all about the Garth concert and we had a great time talking in the car on the way to and from the game (it’s about a 45 minute drive one way). We ended up leaving a little before the game ended because it looked like a massive storm was coming and our team was losing. It did storm and our team did lose, but I still had a great time and was so glad I got to go.
I was reminded once again that God gives us all good things, even when we don’t deserve them. I had a wonderful, memory-making weekend and it’s not lost on me how blessed I am.
It all started on Friday with a call from Dr. L’s office. I’ve been approved for a consultation on deep brain stimulation at Vanderbilt! I am so excited about this potential treatment, but at the same time I don’t want to get my hopes up too high. I might not even be a candidate for it, but at least I’ll get an appointment to see if I am. Dr. L’s office said that Vanderbilt should call me within a few days to set up an appointment.
Saturday was the Garth Brooks concert. It was awesome, epic and so much fun!!!! It was everything I thought it would be. Mom and I had special shirts made by friends of ours and we felt like rock stars. Seriously! Every person we walked by was super impressed by the shirts and wanted to know where we got them. Here’s a picture of us:
Sunday, the fun continued. After church (which was great!), Dad and I headed out to a Smokies baseball game with members from our church. It was our church’s “event of the month”. The only problem: rain! It poured (and by poured, I mean it was a deluge!!) in Knoxville. We had to go to Sevierville for the game and by the time we got there it was still raining, but not as hard. The game was rain delayed for an hour, but then it was under way. I loved spending time with Dad and others from church. I’m not a huge sports fan (what’s weird is that I LOVE sports movies, but can’t really stand to watch actual sports except figure skating (and YES that is a sport), and the occasional UT football/basketball game), but it was really fun. I liked my “Dad and Stephanie” time the best though. I told him all about the Garth concert and we had a great time talking in the car on the way to and from the game (it’s about a 45 minute drive one way). We ended up leaving a little before the game ended because it looked like a massive storm was coming and our team was losing. It did storm and our team did lose, but I still had a great time and was so glad I got to go.
I was reminded once again that God gives us all good things, even when we don’t deserve them. I had a wonderful, memory-making weekend and it’s not lost on me how blessed I am.
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
MRI
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.
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.
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.
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