About 5 months ago, my life began to change again. My dystonia symptoms came back strong and started to attack my body. It started with my left hand and slowly moved to my left foot, my right hand, right foot, back and neck. The pain was unbearable and I knew something about my DBS wasn't working.
I started out by going to Boston to see my neurologist. He did a CT scan to make sure the leads didn't move, and tried changing my settings several times. My symptoms didn't improve, and in fact started to get worse. I started to get a shocking feeling in my head. Every time my left DBS was on I had this feeling on the left side of my head. I had severe headaches and over the last year had been experiencing eye pain and dizziness.
My neurologist didn't know what else to do, so he sent me to the director of the movement clinic at Brigham and Women's hospital. He tried changing my settings as well and decided I should have an MRI of my head. In order to have an MRI when you have a DBS, the whole device needs to be turned off. So, he tried turning it off and when checking all my settings, noticed the numbers on the impedance test were off. He said because of this, I couldn't have an MRI because it likely means there is a short in the wire.
From there, he tried botox in my arms and legs, put me on a new medication and sent me to have an appointment with the neurosurgeon. The surgeon said if no improvement with the botox, medications, or change in settings we would have a discussion about adding another stimulator.
After trying so many things and getting no where, I decided to take a trip to Albany, NY to get a second opinion from my original surgeon who did my DBS surgery in 2011. She knew immediately by my symptoms and the numbers on the impedance test that there was a short and she could fix it. She told me to get working on seeing if my insurance company would approve surgery and she would get me in ASAP. Well, my insurance company denied me. I felt like I was reliving my nightmare I had in 2011 when my DBS was infected and removed. By this time, I could no longer keep the left DBS on at all because of the feeling in my head. My symptoms began to get worse and I was in pain 24/7.
I wrote a letter and fought the insurance company. After fighting for them to approve it for a couple months, they finally said ok and agreed that I needed this done. Once approved, my surgeon scheduled surgery within 2 weeks. She made a small incision on my head right above my ear and opened up my chest where the battery is. She put in a new wire and connected it and turned it on. Ever since the surgery, my eye pain is gone, the dizziness is gone and I no longer have the shocking feeling in my head. My symptoms have already improved slightly but I'm working on getting an appointment with my neurologist to fix my settings a little.
This has been quite the battle. I have fought with my body many times and the pain I experience with dystonia is something I have never felt. The muscle spasms I have been having in my back are excruciating and I am hoping with some small adjustments I will start to feel better.
Because of all that I've been through in my journey with dystonia, I want to share my story with other people. It's been hard and I've had some small setbacks but DBS has truly changed my life. I am hosting a Dystance for Dystonia walk in Nashua, NH on June 2, 2018. I hope to have a big crowd to help me spread awareness for Dystonia and to also raise money to help find a cure. I hope you will all join me in walking, or donate so we can keep fighting to find something that can get rid of this disorder.
Thank you for following my story, and I hope to see you on June 2.
I started out by going to Boston to see my neurologist. He did a CT scan to make sure the leads didn't move, and tried changing my settings several times. My symptoms didn't improve, and in fact started to get worse. I started to get a shocking feeling in my head. Every time my left DBS was on I had this feeling on the left side of my head. I had severe headaches and over the last year had been experiencing eye pain and dizziness.
My neurologist didn't know what else to do, so he sent me to the director of the movement clinic at Brigham and Women's hospital. He tried changing my settings as well and decided I should have an MRI of my head. In order to have an MRI when you have a DBS, the whole device needs to be turned off. So, he tried turning it off and when checking all my settings, noticed the numbers on the impedance test were off. He said because of this, I couldn't have an MRI because it likely means there is a short in the wire.
From there, he tried botox in my arms and legs, put me on a new medication and sent me to have an appointment with the neurosurgeon. The surgeon said if no improvement with the botox, medications, or change in settings we would have a discussion about adding another stimulator.
After trying so many things and getting no where, I decided to take a trip to Albany, NY to get a second opinion from my original surgeon who did my DBS surgery in 2011. She knew immediately by my symptoms and the numbers on the impedance test that there was a short and she could fix it. She told me to get working on seeing if my insurance company would approve surgery and she would get me in ASAP. Well, my insurance company denied me. I felt like I was reliving my nightmare I had in 2011 when my DBS was infected and removed. By this time, I could no longer keep the left DBS on at all because of the feeling in my head. My symptoms began to get worse and I was in pain 24/7.
I wrote a letter and fought the insurance company. After fighting for them to approve it for a couple months, they finally said ok and agreed that I needed this done. Once approved, my surgeon scheduled surgery within 2 weeks. She made a small incision on my head right above my ear and opened up my chest where the battery is. She put in a new wire and connected it and turned it on. Ever since the surgery, my eye pain is gone, the dizziness is gone and I no longer have the shocking feeling in my head. My symptoms have already improved slightly but I'm working on getting an appointment with my neurologist to fix my settings a little.
This has been quite the battle. I have fought with my body many times and the pain I experience with dystonia is something I have never felt. The muscle spasms I have been having in my back are excruciating and I am hoping with some small adjustments I will start to feel better.
Because of all that I've been through in my journey with dystonia, I want to share my story with other people. It's been hard and I've had some small setbacks but DBS has truly changed my life. I am hosting a Dystance for Dystonia walk in Nashua, NH on June 2, 2018. I hope to have a big crowd to help me spread awareness for Dystonia and to also raise money to help find a cure. I hope you will all join me in walking, or donate so we can keep fighting to find something that can get rid of this disorder.
Thank you for following my story, and I hope to see you on June 2.
Very useful information you shared. keep posting.
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