I have had a recent development which has put me in pretty deep water.
Not too long ago I was diagnosed with Thoracic Outlet Syndrome, the nervogenic type. The Vascular surgeon that I'm seeing suggested that I have an injection into the muscles that are holding the nerve bundle hostage, more of a diagnostic tool than anything else, and then physical therapy. He wasn't 100% hopeful that it would help but we were determined to give it a go. Many times the nervogenic TOS can be resolved with a special kind of PT.
In the process of trying to get it all set up my right hand ballooned to over twice it's normal size. After 4 days of this I had to call his office to make the appointment for the PT and asked the nurse if there was any advice she could give me to get the swelling down. She put me on hold and, when she came back on, told me that I was to go to the hospital the next day to have a special MRI and then see the vascular surgeon afterwards. I told her that I couldn't get there as I couldn't drive like this and my husband had to work. She told me that I had no choice, I had to get there somehow. Needless to say I was a little freaked out.
We went in to see him to find out that I am one of the rare cases that have both the nervogenic AND vascular types of TOS. I have to go into the hospital Monday to have a catheter put into the vein that supplies the arm to remove the blood clot that has formed from the damage and then he wants to do the TOS surgery within 2 weeks. I have to inject myself with an anticoagulant twice a day until the surgery to stop any new clots from forming. If my arm is down I have very little blood flow, if it is raised, there is no blood flow at all to the arm.
I have never been so freaked out in my life. He didn't mince words with me- he said that this surgery would be more painful than both of my cervical surgeries combined- they actually have to remove a rib and muscles- and that the recovery is long. However, not doing it can mean that I lose complete use of the arm. It doesn't seem like I have a lot of choice here.
I have faith that this will, if not resolve all of my arm issues, at least let me know which ones are coming from my cervical issues. Let it be a lesson to us all- things may not always be what they seem.