The Patient Experience

Amanda and her family

Dystonia is a movement disorder that involves involuntary muscle contractions that cause slow repetitive movements or irregular postures. There are various forms of dystonia that affects muscle groups throughout the body in different ways. Some individuals experience pain with the movements, tremor or other neurological features. Over time, the symptoms can become more noticeable or widespread and can take a great toll on the quality of life. Deep brain stimulation is a treatment option for patients who no longer reap the best results from medicine. Deep brain stimulation can help restore a better quality of life for patients afflicted with dystonia.

Amanda, a patient of Dr. Pilitsis, shared her story about how deep brain stimulation improved her quality of life:

“As a little girl, I had so many dreams. I wanted to do so much with my life but there was nothing I wanted more than to become a mother. As I got older, I had some medical problems and ended up with a lot of radiation and quite a few surgeries. Every time I had a CT scan or X-rays, I worried I may never be able to have children. I had a lot of problems with my arms and was in a sling most of my adolescent years.  During this time, I also thought about having children and how I wouldn’t be able to hold them. After having my sixth shoulder surgery, I lost use of my hand.  No doctor could really figure it out.  I saw several specialists but it wasn’t until January 2009 when I met one of the nicest doctors and he diagnosed me with dystonia. He tried me on many medications and Botox injections and nothing helped. 

Shortly after this diagnosis, I moved to Florida with my boyfriend so he could go to school.  I lost my health insurance and moved away from my doctor so that I could be with Ryan, who is now my husband. My dystonia became severe and I started having spasms in my feet and neck as well as my hand and wrist.  I was unable to work, had no family around and fell into depression. About a year later, I had found a job and met a few friends. The dystonia was still pretty severe but I had learned to adapt. I now had a wrist brace on 24/7. 

In February 2010, I received the greatest news I could ever imagine. I was pregnant.  Although this was not an ideal time to have a child, I was more than excited and we made it work.  In September 2010, I gave birth to a beautiful and healthy baby girl who I named Hailey. Taking care of her was difficult but I did the best I could. After seeing her beautiful face, I knew I had to do something about the dystonia to help me to take care of my daughter.

I flew back to MA, where I met with my neurologist and went over my options. He suggested Deep Brain Stimulation. At first I panicked but after hearing all the details, I decided this was the best option. In April 2011, I underwent a five hour brain surgery to have the DBS placed. I remember how scared I was going in there. I was going to be awake the whole time and I was going to have no hair!  I went in though, thinking about how good this was going to be for Hailey. I was finally going to be able to hold her with two hands and give her a bath and hold her hand as she learned how to walk. I had to do this.

I came out of surgery with a little headache but nothing major and went home the next day.  I had a little setback when I got an infection and had to have the surgery repeated but it has now been a year and a half since my second surgery and I have a ponytail, I’m typing with two hands and I can walk without a limp.  DBS surgery has changed my life.
Before having DBS, I didn’t have the energy to play with Hailey, I couldn’t go for a walk because my foot would curl in, I was afraid to go out anywhere because I never knew when I would get “stuck” and I was afraid to have any more children for fear of not being able to take care of them.

My daughter is now 2 ½ and I have a beautiful 3 ½ month old little boy. They are my world and because  of DBS, I can do so much with them and be there for them the way they need me to be.  Last May, I decided that because of the struggles I went through with dystonia, I wanted to help the dystonia medical research foundation find a cure.  Although DBS was great for me, it is not great for everyone and it isn’t a cure. I still have spasms occasionally and will likely need the batteries replaced. 

I decided to host an annual dystance4dystonia walk to give back and to help with research for dystonia.  The walk is a little less than four miles and we encourage all people to come, whether they are in a wheelchair, can run it or can walk it slowly.  We also encourage people to bring their families so everyone can see that there are many other people out there with dystonia and everyone with it is so different.  I think it is very important to include family in things like this. Last year, we raised over $5,000! This year was our second annual walk and we raised close to $5,000 again. It is a fun time and it’s a good way to spread awareness, get together with family and friends and to raise money to help find a cure! 

I have met some amazing people with dystonia. Some are in wheelchairs, some have it very severe and others are managed through medication. Everyone I’ve met with dystonia has heard about DBS but have not done it because they don’t know how well it works and are afraid of the actual surgery.  After talking with them and telling them about the surgery and how it has changed my life, they all have a different perspective and are all very interested in doing it to improve their quality of life. Thanks to DBS, I am a happily married 26 year old mother of two and I am enjoying every second of this wonderful life. “

More Patient Stories

Information About Movement Disorders