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Old 11-21-2014, 07:23 PM
jrodefeld jrodefeld is offline
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Join Date: Nov 2014
Posts: 2
8 yr Member
jrodefeld jrodefeld is offline
New Member
Join Date: Nov 2014
Posts: 2
8 yr Member

Originally Posted by Sea Pines 50 View Post
You have posted some very thought provoking questions. With December 4th right around the corner, I feel for you. Is there any way you would be comfortable postponing your surgery date in order to get a second (or even a third) opinion, just to increase your comfort level a bit, as well as to give you a little more time to get the answers you deserve before going into this risky procedure?

I wonder, too, about a few things in your case. First off, I notice you said that the original surgeon (was that Dr. Gelabert?) left your anterior and middle scalene muscles alone, simply taking the first rib (I think). But they would have had to have resected the scalene muscles, unless they were attached to your cervical rib and not to your first rib (as is the case in most of us), and they also left that cervie rib intact. Am I missing something here? If they did take both ribs, I know that UCLA's protocol is to cut just 25% of the scalenes in order to get that first rib out. Have the remaining portions of the scalene muscles subsequently reattached themselves to other structures, or have they behaved properly and atrophied up your neck (she asked, hopefully)?

There's a fairly recent thread on this forum about Dr. Collins, which you can pull up, if you'd like, by using the "search" function located in the upper righthand portion of your screen (just type in his name where it prompts you). I will say the reviews are a bit mixed, esp in terms of TOSers being able to get their surgeon of choice, WC judge, whatever, to take his findings into account in their TOS case. Dr. Agnew is the only one I know of (outside of the UCLA system; those docs stick together!) who will review his reports and images carefully, which is a shame considering the amount of time he so obviously puts into them…

I think it's wonderful that you have a Pain Management Physician (PMP) with a background in Neurology (Neuro), and I have heard nothing but good things about Dr. Agnew. (I thought he was retired, though. Now I'm tempted to pick up the phone and make an appointment with the man myself!) Dr. Jordan, whom you may have heard of, is also a PMP/Neuro, which is great for TOSers, I think. He's an expert on the disorder. But back to him in a moment.

I don't know how to say this next thing diplomatically, so I'll just come out with it and you can take it or leave it, OK? And you should know that my case is one of so-called "true" neurogenic TOS, which has m a y b e (just maybe!) progressed to neurovascular TOS due to a failed 1st rib resection in Denver 9 years ago, with Dr. Annest (through no fault of his own, I had an accident shortly after which compromised the results).

Anyway, I'm certainly no expert on vascular TOS. But I think your surgeon should have known to take the ENTIRE rib out, the first go-round. If I knew that as a layperson from my own piddling research back then, then s/he CERTAINLY should have known better. If the problem was one of access owing to the transaxillary approach, then they could have easily made a second incision, either sub- or supra-clavicularly, to get that sucker out! Just my opinion. But I think I would have a hard time trusting that surgeon to do the "re-do" operation. Again, I'm assuming it's Dr. Gelabert we're talking about here. I've met with Dr. G briefly and I like and respect the man. He's got a good reputation as far as I know. I'm not judging! I'm just sayin'.

If you do find that you want to gather some other medical opinions before you proceed, Dr. Charles Brantigan - Pres./St. Luke's, in Denver, is an excellent vascular surgeon who specializes in complicated TOS cases. There is also Dr. Donahue - Mass Gen'l., in Boston, who I believe is a cardiothoracic vascular surgeon (somebody please correct me if I'm wrong!), and also a top TOS specialist who takes complicated cases.

Here in Southern CA, you have the option to see Dr. Ahn - St. Johns; UCLA, in LA, who is a top TOS vascular surgeon, as well as Dr. Weaver - USC, in LA, a vascular surgeon very experienced in VTOS cases (not so much NTOS - but, as a USC doc, there'll be NO chance of running into that UCLA bias!!! haha). On the PMP/Neuro front, you could book an appointment with Dr. Jordan in Sta. Monica (just be aware, he does not take insurance, but well worth the $, in my opinion!).

Whew!! Sorry to get so long-winded on you here, kid. I am of course no doctor, not even a VTOS case like you, just have many more years of experience on the INSIDE than I would like, living with the TOS monster . You and I are very lucky in that we live in a part of the world where there is excellent care available for this funky disorder. And it IS funky (can you say "anatomic anomaly 5 times, really fast, with a straight face?)

Really hope I haven't made you more Confucious with my verbosity! . Proceed carefully, but I feel like you will be in good hands whichever way you go. You are very hip to have the aftercare piece in mind already. That will play an important part in your return to good health, and I'm sure any PT Dr. Agnew refers you to will be TOS-savvy (hard to find, and worth their weight in gold when you do!). I wish you well and hope that you will keep posting here, as you are able, to let us know how you are doing… or, better yet, to let us know how it's done!

Take care. Oh, and a belated Happy 30th!

I really appreciate this detailed response. I'm leaning towards going ahead and having the surgery. I'm just having some real concerning symptoms but I'm not sure I have much to gain by delaying it. There is clearly overwhelming evidence of TOS and even if I had some other problems going on, I probably could get anyone to address them while the TOS is such a major problem.

I have to say that I really trust Dr Agnew. If you want someone to help you with this condition there is no one I would recommend more highly. I have seen several good TOS neurologists but Dr Agnew is by far the most knowledgeable and thorough of anyone I have seen. In fact he is probably the best doctor I have ever talked to.

There are two surgeons he likes and recommends, Dr Gelabert at UCLA and a guy in Denver. He actually does not like Dr Ahn and doesn't send his patients to see him.

I like Dr Gelabert. I should clarify that he did remove some or part of the scalene muscles on my first operation. I'm not sure how much of the first rib he removed the first time. I think the main problem was the surgery was not thorough enough and the scalenes that he resected from the first rib simply reattached to structures and started causing problems again. The first time I saw Dr Gelabert I didn't see Dr Agnew or any neurologist nor did I see Dr Collins for imaging. With that said, I did have a good experience with Dr Gelabert and recovery was not hard at all.

My impression is that he has spoken to Dr Collins and Dr Agnew extensively about the imaging and he presumably has all the information he needs to do the complete and hopefully permanent procedure. The thing I am most concerned with is that I don't want this compression to return. I want those structures out of there for good.

Anyway, I'll have to see how it goes. I'll make sure that the operation is being done complete and right this time so I can be done with this problem.

Thanks for the response.
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Sea Pines 50 (11-22-2014)