Positive Surgical Outcome:
Primary diagnosis of Neurogenic TOS
I am not sure when I first had symptoms of TOS. I do know it was more than 10 years ago, but how much further back, I don't know.I have always had problems with my back and my neck. I chalked it up to the fact that I'd been involved in several car wrecks, and the fact that I was a volunteer firefighter and had a porchcollapse on my head. While those things probably contributed heavily to the problem, I may never know if they are what actually caused it.
In 2003, I went to a Neurosurgeon with an immense amount of pain in my neck and upper back. He did all the normal things, MRI, X-Ray and saw nothing. I requested that a Myleogram be done and he found a bone spur pressing on the C7 nerve into my left arm. We went into surgery and got that fixed. He told me that I had a lot of fiberous tissue in and around that area. More than he'd ever seen in one person. Nothing more was said about it.
In 2004, I ended up going back with extreme pain between my shoulder blades and virtually no strength in my left arm or hand. Again, we did the MRI and X-Ray. He sat me down and told me that he sincerely thought I had TOS. Up to that point, I'd never heard the term. I had no idea what it was, what it could do to me, nothing. He sent me to a friend of his in the same hospital system. A vascular surgeon. This doctor started me out with the usual, physical therapy, and some tests. We did an EMG, an NCS (nerve conduction study), among other things. The EMG/NCS came back with some very minor positive problems, so they didn't think much about it. I continued with therapy, which only seemed to make matters worse. The PT called the doctor and told him things were progressively going from bad to worse, so, another consulation. He then sent me to the vascular lab to be sure I didn't have any venus compressions. Thankfully that came back just fine, but, what to do now? Nothing was showing up on anything we did. Was it all in my head? Was it just old age creeping in on me? I was getting more and more depressed as the pain got worse.
Finally, during a talk with the surgeon, we decided to go ahead with surgery. I was scared, after hearing what all that meant. Losing a rib, losing muscle, how was I going to cope? Would I be able to use my arm? Even though I was terrified, I had the surgery. For me, a good choice. What I found out afterwards was that that fiberous tissue the Neurosurgeon had mentioned, apparently was also wrapped around the nerves, the first rib and my collar bone, creating a really bad situation. The nerve was being crushed, literally to death. The vascular surgeon was able to clean all of that out, and did a first rib resection with a full anterior scalenectomy and a partial mid scalenectomy. 8 weeks after surgery, I was back in physical therapy. I had to learn a whole new way of breathing, carrying my body, moving, exercising, just doing normal every day things. I was told that recovery would take 18 months to 2 years, possibly longer. Here it is 2007, and I still have some recovery issues.
I have a great deal of topical numbness. I've gotten a third degree burn because I couldn't feel the heat pack I was using. I have to be very careful with things around the left shoulder, because I just can not feel. I did regain almost full use of the arm and hand, thankfully. It no longer hurts to the point of tears to wash or brush my hair, to reach up overhead, or to pick up my granddaughter. I think I am one of the lucky ones.
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