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!
Tuesday, September 22, 2015
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?
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