Fred A. Weaver, M.D. is head of the Division of Vascular Surgery over at the Keck School of Medicine at USC and, according to Dr. Jordan he is one of the top docs doing TOS surgeries in the western US. I was flabbergasted to say the least, as I had never heard his name mentioned on this site (or anywhere else), and so I made an appointment to go and see the man in person in my neverending quest for truth, justice and a possible re-do.

Have already spoken to my original surgeon, Dr. Annest, and know he would be "at my service." He says he is as disappointed as I am that these complications have arisen. But his approach would be both supraclavicular and transaxillary to remove both the middle and anterior scalenes. I'd like to avoid two incisions and that amount of trauma to soft tissue if I can.

So I called Dr. Sanders, who says he can get both muscles out with just a supraclavicular approach. But since my scalene block clearly shows my pec minor muscle to be in severe spasm, he thinks I should also have that muscle released, which he would do by going in - you guessed it! - under the arm.

I've met with Dr. Ahn (whom I believe to be an excellent surgeon) and there are good reasons to have this done in Los Angeles due to personal reasons. I've just really been on the fence about having more surgery; my gut tells me it could make me worse.

So yesterday I toddle off to see the mystery man and the first thing I hear from his esteemed staff is that Dr. Weaver only operates on vascular TOS cases. Wonderful! Could have told me that on the phone. But wait, since the cut end of my anterior scalene has reattached itself by scar tissue to (among other things) the subclavian vein, I guess my case is partly vascular, right?

Long story short, I had an interesting visit with both Dr. Weaver's colleague and then with him. He is very conservative in the cases he takes (which I think is a good thing in a surgeon), especially if you a neuro. It is not true that he only takes vascular cases, but those numbers exceed the number of neuro cases he's done, by far. We all know the neuro cases don't do as well with the surgery, so no big shocker there.

Since I just had the botox injections last week with Dr. J., and given I think the long and comlicated history I have, his advice was to give PT a go for six months before making any decision about a re-do. The thing I liked was that if in six months I came back to see him, having tried PT but with quality of life still not acceptable due to pain, etc. and needing the surgery - Dr. Weaver would ONLY remove the anterior scalene muscle (plus whatever scar tissue or bands he finds compromising nerves and vessels in the thoracic outlet); the middle scalene, which Annest reattached in the original surgery, need not be touched! Less is more. Hmmm wonder if he charges 50%?

He stated that the re-do surgeries are much harder to do because you are dealing not only with anatomic anomolies but with scar tissue from the first surgery. The surgeon cannot predict as easily what they're going to find when they open you up, nor see all that clearly once in there because of bands and/or scar tissue growing over nerves, vessels, etc. And at the end of the day, all you may be doing is creating even more scar tissue and more problems for the patient than you are helping (with increased ROM, decreased pain, etc.). I do remember Dr. Ahn's people telling me that this second operation being even harder to recover from than the first one, so it makes sense.

I hope I am paraphrasing Dr. Weaver accurately. I'm sure I didn't catch everything he said, and I did not agree with his position on some things - for example he stated that he did not think the nerves in my hand would "come back" after being compressed in the BP for so long. There is plenty of research out there regarding nerve regeneration! The muscles in my hand which have wasted away, I agree are probably gone forever, I have heard that from several specialists. But I am not giving up on my nerves.

Please note that this doctor was only talking about my case specifically. I had an extremely delayed diagnoses and I think the hand atrophy itself with TOS is probably rare. So other muscle atrophy or nerve damage that any of you may have with your particular case should be addressed by your treatment teams. It's always a matter of degree, and then when and what kind of intervention takes place.

Bottom line, it is so hard to find physicians who are knowledgable let alone highly trained in the treatment of TOS, I'd like Dr. Weaver and Dr. Jordan to be added to our list and will PM their contact info to Mark so he can stick-em-up there!

Now I'm back to searching out a great TOS-savvy PT within driving distance from my house. Dr. Weaver said his office will try to help me with that, too which I liked. Thought I'd found someone when I set up the botox, but just don't think it's going to work out.

Alison