Hi, and thank you so much for your responses. Wish I could say that I had more clarity after meeting again with both surgeons, but the truth is I have more questions than answers still. It ain't over until the fat lady sings, I guess.
Dr. Gelabert gave me the corrected version of the written scalene block test results, which say that I flunked that test and would not be a good candidate for a R first rib resection (the one Dr. Jordan gave me was for the wrong side of the body [!] and says that I would be an excellent candidate for this surgery…
Sheesh!) At any rate, I explained to him (again) that I did not really expect TOS surgery to offer a reduction in pain for me at this late stage in the game; that my concern was solely with saving my right hand from the neurologic deficit suffered by my left.
Dr. G wants me to explain this to Dr. Mollie Johnston (the neuro who administered the scalene block, simply because Dr. Jordan does not take insurance), and have her do an EMG/NCV study, to see what that showed. I told him I would only submit to that if she agreed to test all the way up behind the neck, to the C-8/T-1 nerve roots. When I met with Dr. Jordan for my regular follow-up and told him about this, he was very unhappy. Says an EMG/NCV is not a good indicator for TOS surgery and would be a complete waste of time. I tend to agree with him, although I reminded him that I've never had a normal EMG/NCV on the left.
Next appointment was with Dr. Ahn, for the angiogram. Procedure was not too painful, they administered propophyl (sp) and verset so was kind of out of it, but I know that he inflated several balloons - which means he found vascular compression in the draining veins of the neck, including the subclavian vein - and I overheard him saying "I'm not impressed" a few times, which as it turns out meant he did not find anything life- or limb-threatening, like a blood clot in a vein or an aneurism in an artery.
Surprisingly, Dr. A wants me in PT for a month or so, to try to address the considerable compression he found in the pec minor muscles bilaterally at the level of the collar bone, before doing pec minor tenoctomies. Still up in the air as to whether I should have a redo on the left first, or an FRRS on the right. The angiogram showed that the left side is definitely still the worst, even though I've had an FRRS on that side (it's been close to ten years ago now, however).
This process of selecting the right surgeon can be so difficult! To tell you the truth, I'm not feeling particularly confident about either doc right now. I may travel up to UC Davis to see Dr. Julie Freischlag once I have the results of all the tests, to get her take on things.
For now, Dr. Jordan is doing an excellent job of keeping my pain semi-manageable (between flare-ups). He would like me to try something out now called Alpha-2-Macroglobulin. Have any of you tried this, to knock out inflammation? It's a broad spectrum multi-purpose protease inhibitor with a "bait and trap" mechanism, which captures and inactivates the bad chemicals damaging your brachial plexus (I think) and causing pain. Once these chemicals are trapped by the A2M, the body eliminates them through natural mechanisms. Dr. J says he is having great success with this procedure, using it as a brachial plexus block on some of his pain patients. He even used the "C" word. (c-u-r-e) But I am a skeptic from waaay back, and this also runs smack dab up against his no-insurance policy, and cost becomes a factor.
If it works, then I might not need surgery (so says Dr. J). But somebody's going to have to explain to me how PT or A2M is going to address the strong possibility that there is a cervical band compressing my right-hand T-1 nerve root in a huge "dent," as was found by my surgeon, Dr. Annest, on the left-hand side back in 2005. It was his esteemed opinion at that time, that the exact same thing would be found mirrored on the right side of my body if and when I had an FRRS on that side. I also don't get how either is supposed to address the significant amount of scar tissue and adhesions that have built up in the thoracic outlet on the left, or are just there "naturally," on the right…
Maybe what I need to find is a really good hand specialist, to do a proper evaluation of my right hand. See how much danger it's really in of developing muscle atrophy, ulnar nerve damage, etc., from compression in the neurovascular bundle at the level of the outlet. Sigh. Why do I feel like I'm on my own here?
Onwards and upwards.
Thanks for reading; saga is to be continued!
Alison