I really understand what you are going through. I had a wonderful neuro, he has move off from here, but did refer me to a great one here. He did get me hook up before leaving to an Epileptologist which they are at a University Hospitals or really big hospitals. I got my prayers answered, and because it was a University Hospital the cost was greatly written off. My thoughts and prayers are with you.

No, I don't have dstonia, but I do have an understanding of it. I google everything I can in order to understand what someone else is going through. I have my issues, no doubt about it. I found NT two years or more ago and never left becaue of all the support I got. I also made some great friends.

As to your condition. One option is not enough. I also know what it is like to loose the shirt off your back financially due to medical problems. I pray that does not happen to you. I had no health insurance I could not get any, because of pre=existing conditions. I had 9 sugeries in as many years. So It ruined me, and I am now in the process of selling my paid for home. Lousy deal, but thats the hand I was given. Long icky story.

Please do as much research as you can on a national level.
There may be physicians out of Nebraska, that would be better for you, than just the one opinion.
What do they want to do for you? What are your options that they are giving you? It is my understanding that these motions are very painful. I am here to listen any time. My heart goes out to all of us who suffer with all these different medical conditions. This site may or may not, have something on Dystonia. Tap in Dystonis under the search bar on top of this page and see what comes up. All my best to you. Ginnie