When I got to work this morning, I was greeted with my daily industry news e-mail and a surprise. For the first time on TV, there will be a two-hour special on an awake deep brain stimulation surgery. What are the odds of that?! I've been going to Vanderbilt since June in hopes that I will have deep-brain stimulation. At this time, it's on the back-burner in hopes that a less-invasive Baclofen pump will work for me, but still...deep brain stimulation will be filmed live on TV! It's air date is Sunday, October 25 at 9pm on the Nat Geo channel for those that would like to watch. I have to see if I can watch it at my parent's house, since I actually got rid of cable back in February.
As for me, I'm patiently (haha - if you know me, you know this is NOT true!) waiting for October 22 when I go back to Vanderbilt to talk about the Baclofen pump. I have no idea what to expect, but I'm thankful things are still moving forward.
Wednesday, October 7, 2015
Tuesday, September 22, 2015
A Quick Update
Last Tuesday I got a call from Patricia, my patient coordinator at Vanderbilt. She and I got an appointment scheduled for the next step. One month from today, on October 22, I'll meet a neurosurgeon and a nurse practitioner to discuss whether a Baclofen pump would help me. There's testing I'll have to have done before any actual surgery would be needed. I'm thankful they can test to see if it would be beneficial before actually doing anything invasive. If it's decided that the Baclofen pump would be of great help to me, it would be surgically implanted. But - I'm getting WAY ahead of myself. First, it's just a meeting to discuss things. :)
And that's all I have for now. See, my blog post title didn't lie, it was a quick update!
And that's all I have for now. See, my blog post title didn't lie, it was a quick update!
Friday, September 4, 2015
The Decision
I keep getting the sense that the Lord wants me to learn patience and yet, I fight Him tooth and nail on this and continually want things immediately. When will I ever learn? I have a feeling it's going to be a life-long battle.
I heard back from Vanderbilt and Dr. T. today about whether I've been approved for deep brain stimulation or not. I waited all day. I got off work early at 2pm (not because of this, but because everyone at work got to leave at 2pm). I hadn't heard anything by the time I left. I reasoned with myself that it was only 1pm their time and I didn't know when their meeting started or how long it would take. Dr. T. had warned me that my case may take a little longer to discuss because I'm not "classic anything". I don't fit in the classic dystonia box. I don't fit in the classic spasticity box. I'm difficult to define. So, I waited. By 3:45pm, I was getting antsy, but still waited. By 4:30pm, I was losing hair, as I was anxiously twirling it in my fingers and wondering if maybe they cancelled their monthly meeting. And then at 5:09pm, Dr. T. called. I let it ring twice, so as not to make it look like I was waiting on pins and needles for this call. :) Dr. T. said that they all talked about me in their meeting and they came to the decision that DBS is a maybe for me. Maybe. Really?!! For those that know me extremely well, you know that I am very black and white. There's no maybe with me. It's all or none. Go big or go home. As I'm sitting here writing this post, it's striking me how ironic that the answer to deep brain stimulation for me is a maybe. God's teaching me something and it's probably patience and He's getting the last laugh!
Maybe is the answer I got. Dr. T. wants to try a Baclofen pump first. This is both discouraging and encouraging all in one. Discouraging because I've already tried Baclofen as a by-mouth drug and it didn't do anything for me. Encouraging because as my mom put it "you get to keep your hair!" And also because it's not brain surgery. Dr. T. said that before he and the other doctors go the extreme route of brain surgery, they would like to go the less-invasive route first and see if that does the trick.
Of course, I had to Google "baclofen pump for dystonia" and I came across this great description of what it is, what it does and what to expect: Baclofen Pump for Dystonia
The phone call with Dr. T. was less than 5 minutes. He said that I'd be getting a call from the clinic to set up an appointment. At first I didn't quite understand what he was talking about until I read the link that I gave above. He said that I would first be hooked up to an IV and given the medication. This didn't make sense to me because I thought I was getting a pump, but after reading the article, I now know the IV is a screening test, before any actual surgery would be performed to place the pump. If the Baclofen pump works then that's great news. If it doesn't, then DBS would be back on the table.
So now, I wait (this is becoming the story of my life!). Wait for a call from the clinic for an appointment for the Baclofen screen test, wait for the appointment, wait to see if it works. Wait, wait, wait.
Several people have told me that I have a great attitude about this whole situation, but in reality, I don't. I want what I want even when I don't know exactly what it is I want. I'm as human, sinful and broken as the next person. During the course of writing (and re-writing) this post, I've laughed and I've cried. I get so frustrated that I can't do things and then that leads to crying and feeling sorry for myself. But as I put as my post on Facebook: "I know who goes before me. I know who stands behind. The God of angel armies is always by my side." Praise Jesus this song was sung last Sunday in church (it's currently my absolute favorite and in my humble opinion we don't sing it enough!!) and Praise Jesus that I get songs stuck in my head all the time and Praise Jesus that this song has been rolling around in my head all week and Praise Jesus that I woke up to this song in my head this morning. The lyrics are what I know, but it's what I have to keep reminding myself of as well. God's got this. So, I do believe that there is a reason for all of this and whether God decides to let me in on that reason or not, I have to trust that everything will work out for His glory and really, what more could I ask for then that?
I heard back from Vanderbilt and Dr. T. today about whether I've been approved for deep brain stimulation or not. I waited all day. I got off work early at 2pm (not because of this, but because everyone at work got to leave at 2pm). I hadn't heard anything by the time I left. I reasoned with myself that it was only 1pm their time and I didn't know when their meeting started or how long it would take. Dr. T. had warned me that my case may take a little longer to discuss because I'm not "classic anything". I don't fit in the classic dystonia box. I don't fit in the classic spasticity box. I'm difficult to define. So, I waited. By 3:45pm, I was getting antsy, but still waited. By 4:30pm, I was losing hair, as I was anxiously twirling it in my fingers and wondering if maybe they cancelled their monthly meeting. And then at 5:09pm, Dr. T. called. I let it ring twice, so as not to make it look like I was waiting on pins and needles for this call. :) Dr. T. said that they all talked about me in their meeting and they came to the decision that DBS is a maybe for me. Maybe. Really?!! For those that know me extremely well, you know that I am very black and white. There's no maybe with me. It's all or none. Go big or go home. As I'm sitting here writing this post, it's striking me how ironic that the answer to deep brain stimulation for me is a maybe. God's teaching me something and it's probably patience and He's getting the last laugh!
Maybe is the answer I got. Dr. T. wants to try a Baclofen pump first. This is both discouraging and encouraging all in one. Discouraging because I've already tried Baclofen as a by-mouth drug and it didn't do anything for me. Encouraging because as my mom put it "you get to keep your hair!" And also because it's not brain surgery. Dr. T. said that before he and the other doctors go the extreme route of brain surgery, they would like to go the less-invasive route first and see if that does the trick.
Of course, I had to Google "baclofen pump for dystonia" and I came across this great description of what it is, what it does and what to expect: Baclofen Pump for Dystonia
The phone call with Dr. T. was less than 5 minutes. He said that I'd be getting a call from the clinic to set up an appointment. At first I didn't quite understand what he was talking about until I read the link that I gave above. He said that I would first be hooked up to an IV and given the medication. This didn't make sense to me because I thought I was getting a pump, but after reading the article, I now know the IV is a screening test, before any actual surgery would be performed to place the pump. If the Baclofen pump works then that's great news. If it doesn't, then DBS would be back on the table.
So now, I wait (this is becoming the story of my life!). Wait for a call from the clinic for an appointment for the Baclofen screen test, wait for the appointment, wait to see if it works. Wait, wait, wait.
Several people have told me that I have a great attitude about this whole situation, but in reality, I don't. I want what I want even when I don't know exactly what it is I want. I'm as human, sinful and broken as the next person. During the course of writing (and re-writing) this post, I've laughed and I've cried. I get so frustrated that I can't do things and then that leads to crying and feeling sorry for myself. But as I put as my post on Facebook: "I know who goes before me. I know who stands behind. The God of angel armies is always by my side." Praise Jesus this song was sung last Sunday in church (it's currently my absolute favorite and in my humble opinion we don't sing it enough!!) and Praise Jesus that I get songs stuck in my head all the time and Praise Jesus that this song has been rolling around in my head all week and Praise Jesus that I woke up to this song in my head this morning. The lyrics are what I know, but it's what I have to keep reminding myself of as well. God's got this. So, I do believe that there is a reason for all of this and whether God decides to let me in on that reason or not, I have to trust that everything will work out for His glory and really, what more could I ask for then that?
Wednesday, August 19, 2015
Brain Games
Yesterday (August 18) was my return to Vanderbilt. To say that I was extremely nervous about these appointments is probably the understatement of the year. I don't know why I was so nervous, but I was and it showed in probably everything I did in the days before going.
My first appointment was with the neuropsychologist. I had no idea what to expect (although they did try to prepare me with a "what to expect" letter in the mail). My appointment with this doctor was at 8am, which meant Mom and I had to leave Knoxville at 6:15am, which meant I had to get up at 5:15am. Of course it was pouring down rain when I got to Mom and Dad's house. Mom drove my car. She thought I might nap; I knew I wouldn't! There were times along the way that I thought we were going to be late, but then it looked like we might be around 15 minutes early. I was super excited about this, until we hit Nashville. Traffic was horrible!!!!! I don't know if it's like that every day or what, but we were actually 10 minutes late for the appointment. The doctor wasn't fazed by it in the least bit. He said he had come to realize that patients with the 8am appointment were bound to be late. :) He took me and Mom back to an exam room where we met Kendra who was a PhD candidate and would be the one actually administering the tests.
I got to know Dr. W. (the neuropsychologist) and he got to know me. He was incredibly personable and friendly and put me right at ease. He did say though that they had designed the tests that I was going to be taking to push me to the limit. I wasn't sure what he meant by that, but it was a little intimidating! After about a half an hour of speaking with him, it was time to start the tests. He had Mom leave the room and he did as well. It was just me and Kendra and the tests. Oh.My.Gosh. Like I said, I had no idea what to expect and the tests turned out to be intense. They started out easy enough, but got harder and harder. There were tests like: "identify the object drawn on this card". I did OK on that test until I got to the clothes pin. I knew what it did, but for the life of me I could not remember the words "clothes pin". So frustrating!!!!
Then there was a test where I had to name as many words as I could think of in 60 seconds that started with the letter "F". I couldn't use names or months though. I started out OK, and then quickly faded. I joked with Kendra that I was not ready for her to give me the letter "F". I was thinking more along the lines of an easier letter like "A". To my surprise she said, "Actually, that's the next letter I want you to use." Let me tell you, "A" was no easier than "F"!!
Then there was a test where Kendra gave me (around) 10 words (it could have been more, could of been less) and she wanted me to repeat back to her as many as I could. I thought this test would easy - WRONG! She tested me three times on this and every time, I messed up. By this time, I was regretting the fact that Mom and I had told both Dr. W. and Kendra that I had an excellent memory!!!
Then, Kendra said she was going to tell me a story and she wanted me to repeat it back to her and try to use the same language she did. I thought, "Oh great, this isn't going to be any better than the words I was supposed to remember and say back to her." But, (surprisingly to me) I remembered everything about the story. I can still tell you today what it was: On May 4 in Cleveland, Ohio there was a three alarm fire. By the time that the firemen got there, two hotels and a restaurant were destroyed." But ask me what those 10 (or more) words were from yesterday and today, the only word I can remember is "elbow" (and surprisingly enough that was one of the words I couldn't remember on all three tests yesterday). But when Kendra asked me to identify from words she said out loud which words were in the group she asked my to memorize and which ones weren't, I nailed that test!
Then there was a test where the words "red", "blue" and "green" were written and I had to identify the color that they were written in (like the word "red" was written, but the color it was written in was blue, so the correct answer is blue.) Again, I thought that this would be easy. Ha! It was not. I struggled and was not fast at all in answering.
Then there was a test where an object was at the top of a sheet of paper and then there were 4 objects below it and one of those 4 was identical to the image on the top of the page. I did well on that test, however I didn't do so well on the test where there were right angles and other shapes and I had to see which shapes matched them in a picture with many lines and shapes all jumbled together. I thought I had done well on this, but it turns out, later when given the results, I did not do well at all!
After an hour and half of this testing, it was done. I got a 30 minute break while they scored my tests. Yay! My brain hurt!
Then the interesting part happened. Dr. W. went over all the results and literally read my mind. I was amazed at how the tests I took revealed to him exactly what I was already experiencing. He said my language skills were normal. He said that I don't have any signs of dementia (praise the Lord!), but I have trouble retrieving words, which is why I had such a hard time remembering the 10 words or so and why I couldn't think of the word "clothes pin". He said this is a direct result of the dystonia. I had no idea. I thought dystonia only effected my motor skills! He said that I do know the words and recognize things, I'm just not as automatic in retrieving those words as I should be. It's like a hitch in my brain in what should be automatic. However, I do remember things when presented in a story like fashion, hence my acing the remembering the story test. He said that my resolve conflict is slower than normal for my age which contributes to my falls. It's like a hitch in what should be automatic to me. My motor execution is not automatic, but my cognitive function in fine. He said that I was in the 81-82 percentile in cognitive function which he said was great. He said my spacial judgment was a little off. When I asked him what percentile I was in for the spacial judgment, he said I was in the 5th percentile, to which I exclaimed, "that's not a little off, that's way off!!" He said that I had to take it all in context because I was so high in cognitive function that kind of levels off the spacial judgment function. When I told him that I can walk with no assistance necessary on sand, he was impressed. He said that sand is the absolute hardest surface for anyone to walk on. My being able to walk on that surface with no assistance told him that walking on it challenges my brain to engage. The other surfaces that I walk on are supposed to be automatic and it's not in me, so I'm not challenging my brain to engage in it. When I told him that different seasons also effect the way I walk (hot weather is the absolute best for me, cold weather makes me feel like I can't move.), he said that that thermoregulation is definitely a factor in neurological diseases.
Then Dr. W. showed Mom and I the place in the brain where all of these hiccups were occurring. It is deep with in the brain (hence the name for deep brain stimulation surgery!) but so very tiny. Like a pea. Maybe a little bit bigger, but I couldn't believe that this little place within the brain could cause so much havoc!! He demonstrated how the surgery would be done. It's a thin wire that would go into this place and it has 4 settings on it. The neurosurgeons would gage which setting is the best for me. This is why I have to be awake during this part of the surgery. And yes, I said "this part" because the surgery is actually done in three steps. The first is to insert bone marker screws into the brain (for this, I'm under general anesthesia.) Then a week later they would attach a frame to those screws that will hold the robotic arms. They then would drill 2 holes into my skull and lower the wires in. Then they would wake me up and do the testing and then they would plug the holes up and tuck the wires underneath my skin. The 3rd surgery would be a week later where they insert the battery pack in under my collarbone and attach all the wires to it.
I was stunned, amazed, and completely fascinated and enthralled at how much all of these neuropsychological tests can allow the neuropsychologist to be able to literally read my brain! When God made the brain, He did so with such intricate beauty and precision. I am in awe.
Next up was the motor skills test. This was fascinating to me as well. First, the physical therapist video taped everything I did. She had me stand for 30 seconds. Just stand, to see what, if anything my body did. My foot didn't disappoint. But what I found fascinating was that after she stopped the recording she asked if I meant to do "all of that" with my neck. I had no idea I was doing anything with my neck!! So, obviously she saw something. Then I did neurological tests like touching my finger to my nose and then to her finger. She made me sit on the floor and recorded how I got up. Then I had to brush my teeth (yes, actually brush my teeth - she gave me the toothbrush as a souvenir.). I had to make a sandwich (she didn't make me eat it as she said the bread wasn't stale, but it wasn't fresh either!). To make the sandwich, I had to toast the bread and unwrap a piece of cheese to go on the bread. Then I had to clean a counter. I had to brush my hair. I had to get out of bed (for this I had to get under a cover on the exam table and then get up.). I had to walk for her and I actually did this without the walker or the cane, but I had a wall if I needed to hold onto something. Then I had to walk with the walker and carry a Wal-Mart bag with me that had items in it. All the while the physical therapist was video taping me. This lasted about 90 minutes.
A few of the things Jennifer (the physical therapist that was giving me the test) observed: She commented that I rarely use my left hand. This is true! It's mostly there for show :) OK, not really. She noticed that I only used it when I absolutely had no other choice. I have definitely noticed this. I have trained my right hand to do just about everything. I told her that I can get a gallon of milk out of the refrigerator with my right hand, but if I try it with my left, my hand just goes limp. I told her that when I type, I use mostly my right hand. My left will contribute every once in awhile, but somehow, I have learned to type pretty fast using just my right hand. She also commented on the fact that I don't walk like a "normal" dystonia patient. She didn't elaborate and I didn't have a chance to ask her what she meant by that. When I told her that I can walk in sand without any assistance, I think I blew her mind. She actually said that I'm off the charts in the other direction. She said that no dystonia patient can do that. She said (echoing Dr. W.) that sand is the absolute hardest surface to walk on for anyone. She couldn't believe I could do it.
On the drive home (Mom was driving), I commented to Mom that I was absolutely drained. And she said that she wasn't surprised by that. The thing was, I was surprised by it! I went in thinking these tests would be a breeze and I came out knowing my brain was completely drained. I gave it my all. I finally knew what Dr. W. meant when he said he was going to stretch my brain to its absolute limit! He did and I was spent. I tried napping on the way home and did a little, but it wasn't until I actually got home that I realized the depth of how drained I was. I went to bed at 9pm.
The next step is for all the neurologists, neurosurgeons, neuropsychologists, physical therapists and probably more people that I don't even have on my radar now to meet on September 4. My case will be brought up and discussed and everyone has to agree that I'm a good candidate for deep brain stimulation surgery. So, September 4 is D-day (decision day). I'll either be moving forward (deciding if I actually want to go through with the surgery, getting insurance approval, meeting with the neurosurgeon, getting a surgery date set...) or will find out if I'm not a candidate. Either Patricia (my patient coordinator) or Dr. T. will call me that day and let me know of the outcome. Until then, I wait and I pray and I wait some more and I pray some more!
I truly believe that everything is in God's hands. He'll let me know the decision soon enough! Until then it's wait and pray and then repeat. :)
My first appointment was with the neuropsychologist. I had no idea what to expect (although they did try to prepare me with a "what to expect" letter in the mail). My appointment with this doctor was at 8am, which meant Mom and I had to leave Knoxville at 6:15am, which meant I had to get up at 5:15am. Of course it was pouring down rain when I got to Mom and Dad's house. Mom drove my car. She thought I might nap; I knew I wouldn't! There were times along the way that I thought we were going to be late, but then it looked like we might be around 15 minutes early. I was super excited about this, until we hit Nashville. Traffic was horrible!!!!! I don't know if it's like that every day or what, but we were actually 10 minutes late for the appointment. The doctor wasn't fazed by it in the least bit. He said he had come to realize that patients with the 8am appointment were bound to be late. :) He took me and Mom back to an exam room where we met Kendra who was a PhD candidate and would be the one actually administering the tests.
I got to know Dr. W. (the neuropsychologist) and he got to know me. He was incredibly personable and friendly and put me right at ease. He did say though that they had designed the tests that I was going to be taking to push me to the limit. I wasn't sure what he meant by that, but it was a little intimidating! After about a half an hour of speaking with him, it was time to start the tests. He had Mom leave the room and he did as well. It was just me and Kendra and the tests. Oh.My.Gosh. Like I said, I had no idea what to expect and the tests turned out to be intense. They started out easy enough, but got harder and harder. There were tests like: "identify the object drawn on this card". I did OK on that test until I got to the clothes pin. I knew what it did, but for the life of me I could not remember the words "clothes pin". So frustrating!!!!
Then there was a test where I had to name as many words as I could think of in 60 seconds that started with the letter "F". I couldn't use names or months though. I started out OK, and then quickly faded. I joked with Kendra that I was not ready for her to give me the letter "F". I was thinking more along the lines of an easier letter like "A". To my surprise she said, "Actually, that's the next letter I want you to use." Let me tell you, "A" was no easier than "F"!!
Then there was a test where Kendra gave me (around) 10 words (it could have been more, could of been less) and she wanted me to repeat back to her as many as I could. I thought this test would easy - WRONG! She tested me three times on this and every time, I messed up. By this time, I was regretting the fact that Mom and I had told both Dr. W. and Kendra that I had an excellent memory!!!
Then, Kendra said she was going to tell me a story and she wanted me to repeat it back to her and try to use the same language she did. I thought, "Oh great, this isn't going to be any better than the words I was supposed to remember and say back to her." But, (surprisingly to me) I remembered everything about the story. I can still tell you today what it was: On May 4 in Cleveland, Ohio there was a three alarm fire. By the time that the firemen got there, two hotels and a restaurant were destroyed." But ask me what those 10 (or more) words were from yesterday and today, the only word I can remember is "elbow" (and surprisingly enough that was one of the words I couldn't remember on all three tests yesterday). But when Kendra asked me to identify from words she said out loud which words were in the group she asked my to memorize and which ones weren't, I nailed that test!
Then there was a test where the words "red", "blue" and "green" were written and I had to identify the color that they were written in (like the word "red" was written, but the color it was written in was blue, so the correct answer is blue.) Again, I thought that this would be easy. Ha! It was not. I struggled and was not fast at all in answering.
Then there was a test where an object was at the top of a sheet of paper and then there were 4 objects below it and one of those 4 was identical to the image on the top of the page. I did well on that test, however I didn't do so well on the test where there were right angles and other shapes and I had to see which shapes matched them in a picture with many lines and shapes all jumbled together. I thought I had done well on this, but it turns out, later when given the results, I did not do well at all!
After an hour and half of this testing, it was done. I got a 30 minute break while they scored my tests. Yay! My brain hurt!
Then the interesting part happened. Dr. W. went over all the results and literally read my mind. I was amazed at how the tests I took revealed to him exactly what I was already experiencing. He said my language skills were normal. He said that I don't have any signs of dementia (praise the Lord!), but I have trouble retrieving words, which is why I had such a hard time remembering the 10 words or so and why I couldn't think of the word "clothes pin". He said this is a direct result of the dystonia. I had no idea. I thought dystonia only effected my motor skills! He said that I do know the words and recognize things, I'm just not as automatic in retrieving those words as I should be. It's like a hitch in my brain in what should be automatic. However, I do remember things when presented in a story like fashion, hence my acing the remembering the story test. He said that my resolve conflict is slower than normal for my age which contributes to my falls. It's like a hitch in what should be automatic to me. My motor execution is not automatic, but my cognitive function in fine. He said that I was in the 81-82 percentile in cognitive function which he said was great. He said my spacial judgment was a little off. When I asked him what percentile I was in for the spacial judgment, he said I was in the 5th percentile, to which I exclaimed, "that's not a little off, that's way off!!" He said that I had to take it all in context because I was so high in cognitive function that kind of levels off the spacial judgment function. When I told him that I can walk with no assistance necessary on sand, he was impressed. He said that sand is the absolute hardest surface for anyone to walk on. My being able to walk on that surface with no assistance told him that walking on it challenges my brain to engage. The other surfaces that I walk on are supposed to be automatic and it's not in me, so I'm not challenging my brain to engage in it. When I told him that different seasons also effect the way I walk (hot weather is the absolute best for me, cold weather makes me feel like I can't move.), he said that that thermoregulation is definitely a factor in neurological diseases.
Then Dr. W. showed Mom and I the place in the brain where all of these hiccups were occurring. It is deep with in the brain (hence the name for deep brain stimulation surgery!) but so very tiny. Like a pea. Maybe a little bit bigger, but I couldn't believe that this little place within the brain could cause so much havoc!! He demonstrated how the surgery would be done. It's a thin wire that would go into this place and it has 4 settings on it. The neurosurgeons would gage which setting is the best for me. This is why I have to be awake during this part of the surgery. And yes, I said "this part" because the surgery is actually done in three steps. The first is to insert bone marker screws into the brain (for this, I'm under general anesthesia.) Then a week later they would attach a frame to those screws that will hold the robotic arms. They then would drill 2 holes into my skull and lower the wires in. Then they would wake me up and do the testing and then they would plug the holes up and tuck the wires underneath my skin. The 3rd surgery would be a week later where they insert the battery pack in under my collarbone and attach all the wires to it.
I was stunned, amazed, and completely fascinated and enthralled at how much all of these neuropsychological tests can allow the neuropsychologist to be able to literally read my brain! When God made the brain, He did so with such intricate beauty and precision. I am in awe.
Next up was the motor skills test. This was fascinating to me as well. First, the physical therapist video taped everything I did. She had me stand for 30 seconds. Just stand, to see what, if anything my body did. My foot didn't disappoint. But what I found fascinating was that after she stopped the recording she asked if I meant to do "all of that" with my neck. I had no idea I was doing anything with my neck!! So, obviously she saw something. Then I did neurological tests like touching my finger to my nose and then to her finger. She made me sit on the floor and recorded how I got up. Then I had to brush my teeth (yes, actually brush my teeth - she gave me the toothbrush as a souvenir.). I had to make a sandwich (she didn't make me eat it as she said the bread wasn't stale, but it wasn't fresh either!). To make the sandwich, I had to toast the bread and unwrap a piece of cheese to go on the bread. Then I had to clean a counter. I had to brush my hair. I had to get out of bed (for this I had to get under a cover on the exam table and then get up.). I had to walk for her and I actually did this without the walker or the cane, but I had a wall if I needed to hold onto something. Then I had to walk with the walker and carry a Wal-Mart bag with me that had items in it. All the while the physical therapist was video taping me. This lasted about 90 minutes.
A few of the things Jennifer (the physical therapist that was giving me the test) observed: She commented that I rarely use my left hand. This is true! It's mostly there for show :) OK, not really. She noticed that I only used it when I absolutely had no other choice. I have definitely noticed this. I have trained my right hand to do just about everything. I told her that I can get a gallon of milk out of the refrigerator with my right hand, but if I try it with my left, my hand just goes limp. I told her that when I type, I use mostly my right hand. My left will contribute every once in awhile, but somehow, I have learned to type pretty fast using just my right hand. She also commented on the fact that I don't walk like a "normal" dystonia patient. She didn't elaborate and I didn't have a chance to ask her what she meant by that. When I told her that I can walk in sand without any assistance, I think I blew her mind. She actually said that I'm off the charts in the other direction. She said that no dystonia patient can do that. She said (echoing Dr. W.) that sand is the absolute hardest surface to walk on for anyone. She couldn't believe I could do it.
On the drive home (Mom was driving), I commented to Mom that I was absolutely drained. And she said that she wasn't surprised by that. The thing was, I was surprised by it! I went in thinking these tests would be a breeze and I came out knowing my brain was completely drained. I gave it my all. I finally knew what Dr. W. meant when he said he was going to stretch my brain to its absolute limit! He did and I was spent. I tried napping on the way home and did a little, but it wasn't until I actually got home that I realized the depth of how drained I was. I went to bed at 9pm.
The next step is for all the neurologists, neurosurgeons, neuropsychologists, physical therapists and probably more people that I don't even have on my radar now to meet on September 4. My case will be brought up and discussed and everyone has to agree that I'm a good candidate for deep brain stimulation surgery. So, September 4 is D-day (decision day). I'll either be moving forward (deciding if I actually want to go through with the surgery, getting insurance approval, meeting with the neurosurgeon, getting a surgery date set...) or will find out if I'm not a candidate. Either Patricia (my patient coordinator) or Dr. T. will call me that day and let me know of the outcome. Until then, I wait and I pray and I wait some more and I pray some more!
I truly believe that everything is in God's hands. He'll let me know the decision soon enough! Until then it's wait and pray and then repeat. :)
Saturday, August 8, 2015
Back to Vanderbilt
I have a testing date! August 18 I'll be heading back to Vanderbilt. I have two appointments set up. I will see a Neuropsychologist at 8am and that appointment will last 3 to 3 and 1/2 hours. Then at 1pm I have a motor skills test that will last 2 hours. I'm glad that I'm being sent information on both appointments because I have absolutely no idea what to expect. I was told that I need to bring someone along with me and I am very thankful and grateful that Mom is going with me. I'll admit, I'm anxious about these appointments, but I know nothing will happen that God hasn't already ordained. Patricia (my patient coordinator) told me that my case will be reviewed and discussed when all the neurologists meet on September 4 and that either Dr. T. or she would call me to let me know the results.
I am so, so thankful that things are moving forward. I am realistic though and am trying not to get my hopes up for anything. These tests that I'm having may reveal that I'm not a candidate for deep brain stimulation. Or, I could have the surgery and still not see any results. I am so glad that God's got control of all of this and I need only to follow His direction. I am very aware that there are others out there in worse shape then me and I have to prepare myself for the news that I'm not a candidate for DBS. But, one day at a time, right?
I got a piece of mail from Vanderbilt this week that made me laugh. Back in 2008/2009, I had shunt surgery at the children's hospital because my neurosurgeon was a pediatric neurosurgeon who also performed surgery on adults. I still get mail from them telling me about hydrocephalus walks and the like. (At that time, that's what they thought I had: hydrocephalus) but I've never gotten a piece of mail addressed to my parents (or in this case parent.), but sent to my address.:
It gave me a good laugh!
I'll close by saying that, yes, I am anxious about what's to come or not to come, but I know it will all work out for God's glory. God's teaching me so much through this journey. My hope and wish is that I will glorify God with each step I take. I fail at this every day, but that's where His grace comes in and I am so very, very thankful for that!
I am so, so thankful that things are moving forward. I am realistic though and am trying not to get my hopes up for anything. These tests that I'm having may reveal that I'm not a candidate for deep brain stimulation. Or, I could have the surgery and still not see any results. I am so glad that God's got control of all of this and I need only to follow His direction. I am very aware that there are others out there in worse shape then me and I have to prepare myself for the news that I'm not a candidate for DBS. But, one day at a time, right?
I got a piece of mail from Vanderbilt this week that made me laugh. Back in 2008/2009, I had shunt surgery at the children's hospital because my neurosurgeon was a pediatric neurosurgeon who also performed surgery on adults. I still get mail from them telling me about hydrocephalus walks and the like. (At that time, that's what they thought I had: hydrocephalus) but I've never gotten a piece of mail addressed to my parents (or in this case parent.), but sent to my address.:
It gave me a good laugh!
I'll close by saying that, yes, I am anxious about what's to come or not to come, but I know it will all work out for God's glory. God's teaching me so much through this journey. My hope and wish is that I will glorify God with each step I take. I fail at this every day, but that's where His grace comes in and I am so very, very thankful for that!
Tuesday, August 4, 2015
Some News
Yesterday (Monday), I got a call from my doctor's office saying that they had gotten the results of the 24-hour urine test that I had done and they were faxing it to the neurologist that I saw at Vanderbilt (the one who ordered the test). I asked if they could give me the results and they couldn't. I'm not sure if it was because they didn't know how to read them or if they didn't know what the doctor was specifically testing for or if it was because of HIPPA laws, but I was going to have to wait for the results. I carried my phone around all day hoping Vanderbilt would call, but they didn't. So this morning, I begged Jesus to have them call me. Yes, I know it's a little thing, but God's in the details! And He answered my prayer!!!
Patricia (my patient coordinator at Vanderbilt) called me with news this afternoon: I don't have Wilson's disease!! And yes, as opposed to my last blog update, I am SO HAPPY that I don't have it. This actually does surprise me a little bit (that I'm happy about not having it) because of how much I actually thought that it may be the lesser of two evils. But now that I know I don't have it, I am extremely happy!! Because of this news, Dr. T. (my neurologist at Vanderbilt) approved me for the next steps in getting deep brain stimulation if that's how I want to continue. It is.
So, Patricia has to coordinate two more appointments for me. One is the motor skills appointment and she said that would last about 2 hours and the other is the cognitive psych appointment and that, she said, would last about 3 to three and half hours. She said she could break the appointments up over two days or schedule them both on the same day. Since I'm driving from Knoxville, I asked that they be on the same day. It's the kill two birds with one stone way of doing things! Plus, as you all know, I'm not very patient! She said that the goal is to get all of these tests done in time for Dr. T. to present my case to all the other neurologists in their September 4 meeting. We talked about days that I couldn't do and she said that she had to get with both of those departments and would call me back when a date is set. So that's it for now. I'm very happy that the ball is now once again rolling. It rolled several times before, but it was always stop and go.
I'll update the blog again when I have a confirmed date. Pray that I pass these tests (I really do feel like I'm in school again) if it's God's will. I take comfort in the fact that God knows all things and He knows if I'm a candidate or not for DBS. In His time everything will be laid out like He planned. If I get DBS and it works and I can walk without a walker or cane - PRAISE JESUS!! If I don't qualify for the surgery or even if I have the surgery and I still can't walk without the walker or cane, I will still PRAISE JESUS. He's daily teaching me things (even patience, although I'm a begrudging pupil on that one!). I'm in God's hands and for that, I am very thankful!
Patricia (my patient coordinator at Vanderbilt) called me with news this afternoon: I don't have Wilson's disease!! And yes, as opposed to my last blog update, I am SO HAPPY that I don't have it. This actually does surprise me a little bit (that I'm happy about not having it) because of how much I actually thought that it may be the lesser of two evils. But now that I know I don't have it, I am extremely happy!! Because of this news, Dr. T. (my neurologist at Vanderbilt) approved me for the next steps in getting deep brain stimulation if that's how I want to continue. It is.
So, Patricia has to coordinate two more appointments for me. One is the motor skills appointment and she said that would last about 2 hours and the other is the cognitive psych appointment and that, she said, would last about 3 to three and half hours. She said she could break the appointments up over two days or schedule them both on the same day. Since I'm driving from Knoxville, I asked that they be on the same day. It's the kill two birds with one stone way of doing things! Plus, as you all know, I'm not very patient! She said that the goal is to get all of these tests done in time for Dr. T. to present my case to all the other neurologists in their September 4 meeting. We talked about days that I couldn't do and she said that she had to get with both of those departments and would call me back when a date is set. So that's it for now. I'm very happy that the ball is now once again rolling. It rolled several times before, but it was always stop and go.
I'll update the blog again when I have a confirmed date. Pray that I pass these tests (I really do feel like I'm in school again) if it's God's will. I take comfort in the fact that God knows all things and He knows if I'm a candidate or not for DBS. In His time everything will be laid out like He planned. If I get DBS and it works and I can walk without a walker or cane - PRAISE JESUS!! If I don't qualify for the surgery or even if I have the surgery and I still can't walk without the walker or cane, I will still PRAISE JESUS. He's daily teaching me things (even patience, although I'm a begrudging pupil on that one!). I'm in God's hands and for that, I am very thankful!
Saturday, July 25, 2015
In Progress...The Next Step
I haven't updated this blog since my Vanderbilt consult on June 30 because there really hasn't been anything to update about. I had the consult right before the July 4 holiday, so I knew it would be a little while before I heard back. But two weeks after the appointment, I got antsy and called Vanderbilt. They had not received any information from the Mayo Clinic yet. They suggested that maybe I should call Mayo and see what the hold-up was. So I called and Mayo said that they had in fact received the request that Vanderbilt had sent, but there were so many patients asking for records to be sent that they were about 2 weeks behind in sending records out. I called them on a Friday (I know, probably a HORRIBLE day to call!) and they said that my records should arrive at Vanderbilt by the middle of the next week. I called Vanderbilt back and informed them of this. While I was on the phone with them, it struck me that maybe, just maybe my internist might have those Mayo records. I told Vanderbilt that I was going to call them and see and if they did, I'd have them faxed over to them. Why I didn't think of this before, I have no idea! I called my internist and he did have them!! I requested that they be faxed to Vanderbilt and then asked if those results showed if Mayo had tested my copper levels. They had and mine were fine. I asked what they meant by fine and the nurse explained that copper levels should be within a 75-144 something or other range (I really don't remember, all I remember were the numbers) and mine were 122. At this, I became my own doctor and ruled out Wilson's. I was in a horrible mood the rest of the day! And as much as I thought I had prepared myself for any answer, I realized that I had my hopes on having Wilson's (as strange as that may seem). It struck me that on June 29, Wilson's wasn't even on my radar and by July, I really wanted to have it. It sounds extremely strange and wrong to say that I "want" a disease or hope that I have it, but after pondering that awhile, I came to the conclusion that it's more that I want everything wrapped up in a neat little box, then I actually want a disease. Symptoms could be blamed on one thing. I could take a pill and everything would be good. In reality, even if I do have Wilson's, I'm not sure that taking a pill or supplement will heal everything. It might be that I have walking problems the rest of my life. So, after being in a bad mood the rest of the day, surprisingly I woke up the next day, Saturday, in an excellent mood. I'm not being sarcastic either. I don't know what God did to me overnight, but my mood the next day was a complete 180 from the day before. It was a new day and God saw fit to wake me up. I wasn't going to waste it! I had a most excellent day.
The following weeks were spent waiting on a call from Vanderbilt. Yes, I could have called them and I almost did, but I kept coming back to the conclusion that if there was anything to call about they would call. Plus, I just knew that I had my answer: it wasn't Wilson's. I wasn't as anxious to receive a call as I had been! So I waited. As stated before I am probably one of the world's least patient people, but I really think God was using the time that I didn't hear from Vanderbilt to mold and shape me. I still don't know what He's molding and shaping me into, but I do know He's working on me. Then, this past Wednesday, I got home from work and checked the mail. There was something from Vanderbilt. I got excited for a second and then thought, "it's probably a bill". But I opened it and it wasn't a bill. It was a prescription. It wasn't a prescription for drugs though, it was a prescription for a test - a 24 hour urine collection test (oh joy!). So...this means that the doctor did receive my test results from the Mayo Clinic and he hasn't completely ruled Wilson's out. This is why he's the doctor and I am not. He had mentioned to Mom and I that even if my blood tests came back OK, that he might prescribe a urine test too. So, this is the next step. I called my internist's office and asked if they did those tests and they said yes, so on Thursday I went and picked up the supplies. Thankfully I can do this test over the weekend and can return it to them on Monday. I really hope that people who have to analyze this stuff get paid big bucks because I think it's kind of disgusting! I'm glad I picked up the supplies on Thursday because I ended up having a ton of questions and must have called the lab lady 20 times! I felt so bad, but she was so sweet and answered all of them.
That's where things stand now. I'm going to do the test tomorrow (I don't want pee sitting around my house for any longer than I have to have it there!!). Thankfully, I don't have to refrigerate it, as they want it room temp. I think if I had to do that I'd be sanitizing my fridge for the next month or so. After I do the test, I'm sure there will be lots more waiting. Whoever has been praying that I have patience, please stop. ;) I'm kidding, really. I don't like waiting (who does?), but God's ways are not my ways and He's teaching me something, even if I don't yet know what that something is.
The following weeks were spent waiting on a call from Vanderbilt. Yes, I could have called them and I almost did, but I kept coming back to the conclusion that if there was anything to call about they would call. Plus, I just knew that I had my answer: it wasn't Wilson's. I wasn't as anxious to receive a call as I had been! So I waited. As stated before I am probably one of the world's least patient people, but I really think God was using the time that I didn't hear from Vanderbilt to mold and shape me. I still don't know what He's molding and shaping me into, but I do know He's working on me. Then, this past Wednesday, I got home from work and checked the mail. There was something from Vanderbilt. I got excited for a second and then thought, "it's probably a bill". But I opened it and it wasn't a bill. It was a prescription. It wasn't a prescription for drugs though, it was a prescription for a test - a 24 hour urine collection test (oh joy!). So...this means that the doctor did receive my test results from the Mayo Clinic and he hasn't completely ruled Wilson's out. This is why he's the doctor and I am not. He had mentioned to Mom and I that even if my blood tests came back OK, that he might prescribe a urine test too. So, this is the next step. I called my internist's office and asked if they did those tests and they said yes, so on Thursday I went and picked up the supplies. Thankfully I can do this test over the weekend and can return it to them on Monday. I really hope that people who have to analyze this stuff get paid big bucks because I think it's kind of disgusting! I'm glad I picked up the supplies on Thursday because I ended up having a ton of questions and must have called the lab lady 20 times! I felt so bad, but she was so sweet and answered all of them.
That's where things stand now. I'm going to do the test tomorrow (I don't want pee sitting around my house for any longer than I have to have it there!!). Thankfully, I don't have to refrigerate it, as they want it room temp. I think if I had to do that I'd be sanitizing my fridge for the next month or so. After I do the test, I'm sure there will be lots more waiting. Whoever has been praying that I have patience, please stop. ;) I'm kidding, really. I don't like waiting (who does?), but God's ways are not my ways and He's teaching me something, even if I don't yet know what that something is.
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