I just got back from Boston and seeing Dr. Donahue! I traveled half way across the country to see the best doctor out there. His understanding of TOS is matched only by his compassion and understanding.
Mass General was so accommodating arranging for me to do three things in just one day.
1. I had a CT scan. I had a bad reaction to the dye, but it wore off in an hour. (It made me feel really really crummie inside). Most people will not have bad reactions.
2. Saw Dr. Donahue for about an hour and a half exam. He took a complete nuanced history and he understood things I was saying. Things that most doctor's response would be to just blankly stare at me. He went over the 2-d images of the CT scan and said he sees restriction of my arteries by the scalene. He also did a detailed physical exam and he found I have little pinkie strength. I had not known that. Of course, my blood would rush out of my hands when elevated in any way.
3. I had Botox injections to relax the neck and pec muscles. This procedure was easy. They should start working in 2 weeks and last maybe 2-3 months. This procedure is as much diagnostic as it is therapeutic. If it helps, it is a sign that I have TOS.
While many would say Dr. Donahue is an expert, if not the expert on TOS, he is modest and is the first to say there is so much he does not know about TOS. He is very conservative in recommending surgery and not only wants to explore all options first, but also tries to fit all the pieces of the puzzle together to make sure you even probably have TOS.
He wants as many pieces of the puzzle, as he describes it, as possible. He said he never recommends surgery but can come to a mutual decision with his patient on whether to do it or not. Because he is so selective, he says he has never made anyone worse from it. Usually, his patient's get 80 percent better with surgery. Only 20 percent of his patient's go on to have surgery.
They are going to construct a 3-D image of my CT scan, which will show more than the 2D images. This will take a few weeks. That will be another piece of the puzzle.
Further, we will see how this botox works.
I do not know if I will be having surgery. If I do, it will be by Dr. Donahue. What I do know for sure, is that, I am finally in good hands. Whether I get better without surgery or with, I can finally rest easy knowing that there will be a solution with Dr. Donahue.
Boston is an incredible city and it was so fun to go there.