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

Best of luck ** I hope you can find a very good PT nearby.

You can PM the dr info to me since Mark will have to pass it on to me anyway now that the edit time is only 12 hrs.
that way we can add it in to the correct state on the list.

We might have Jordan added in already.

I wonder if low level laser or anything from the outside of the body can help to decrease the scar tissue?

deep tissue massage? if pt can tolerate it?

just wondering if any have asked dr or surgeon about that?

Alison! So nice to hear your update, and pleasant (?) surgeon's visit! I hope the PT will do the job, along with the botox injections...any relief from that?

While I was REALLY hoping to meet you when you came to Denver, I realize how very much easier a local surgery (if you go ahead with it later) would be for you, so I'm happy for you!

Thank you for sharing.

I will "share" that the "sticking point" regarding [me] being surgical or not at this point [in my case] is that docs get "hung up" on the amount/degree, of muscle wasting/atrophy, especially of hand intrinsics, oh, and the fixed flexor contractures/deformity of the ulnar innervated fingers.

This concept of "no recovery" of atrophy/muscle wasting [due to nerve dysfunction, not disuse or pain guarding] is embedded in the textbooks that they see day after day in med school.

They [some docs] don't see an "upside" [on me] for example, because they believe that since the likelihood of reversing the most obvious outcome of a BP trauma (softball collision/'97), is, according to their textbooks, 20% or lower, if at all.

So, we may be seen as automatic surgical "failures" right out of the gate, and not many docs these days want to get involved. Do I want a doc doing a BP sugery on me, if they are already thinking I am not going to get better? Nope. Some of us are past the point of being "curable", but it would seem that surgery may still be indicated to preserve nerve/vascular function at one point in time.

Not many docs "see" advanced/extensive wasting/atrophy, etc [in their practice] due to either BP trauma or TOS, regardles of type, because it doesn't usually get that far.

More docs would like to believe that the atrophy/wasting is due to patient disuse/avoidance due to pain, than accept the possibility that this is actually caused by nerve dysfunction [from either vascular compromise, nerve compression, or both].

I am also a [very] delayed dx.

Just a quick note....

I usually don't post, but this caught my eye...

I am 3 and 3 1/2 years on bilateral redos and proof that they can work. While I am not perfect, I am functional, working, and enjoying life. My first surgeon left me with rib shards that were constantly being dragged through the plexus (2-3 years like this). My second surgeon, a godsend, had to literally dig mynerves out of the scar tissue. Very ouchy, but survivable. During this time, I went to school, and then graduated 1 year after the 4th surgery. I am now working and gling to finish my masters in Dec. Dont' let anyone tell you that redos can't be done.

Linda

Linda

Thanks for this post. It's always great to hear about a successful surgery since I am currently considering my very first surgery and am very nervous about it. Would you mind sharing the name of your second godsend surgeon?


Many many thanks!

Dr. Brantigan. I traveled from Long Island, NY to CO to see him and would again in a heartbeat if the need arose.

Linda

I have meant to post this and keep forgetting - dang brain fog! - but this seems an appropriate thread to add some small bit of encouragement for those who like me have seen wasting of the muscles in the hand. In a nutshell for those who don't know my story:

I was injured in Feb 2003., dx'd in Aug. '03 and had surgery Feb '04. So I was not misdiagnosed or undiagnosed for a long time, mostly because I found the old MGH board VERY early on. But my injury (due to a vaccine reaction) caused my rt shoulder to fall 1 1/2 inches almost overnight (similar to a stroke victim) and the full weight of the shoulder girdle to suddenly bear down, instead of gradually, on the brachial plexus. An autoimmune reaction to the vaccine inflamed the brachial plexus and also the spinal accessory nerve, which caused unbearable pain for a week or so unhelped by any pain meds and brought on my first experiences with tingling, numbness, color and temperature changes, etc. The pain settled to a bearable 4-5 after that week or so, and I was told I would be fine within 6 months, but that didn't happen.

Why not? Because I was predisposed to TOS, due to my build - thin, narrow shoulders and long neck, short (at 5" 2, I've been reaching overhead my entire life!), and an extra scalene only 25% of the population has - a scalene minimus, which was wrapped all around and through the brachial plexus and pressing up against the subclavian vein.

At any rate I went through PT 2X, chiropractic, saw specialists, had numerous tests, MRIs, EMGs, pain meds, then at 6 mos flew to see Dr Togut and was dx'd with TOS and RSD. Came back and entered a multi-disciplinary pain clinic ( joke/horror story), got worse instead of better as time went on, had to quit working, by Jan '05 pain was constant 8-9 and sum existance was dragging crying self from bed to couch and back. I couldn't BEAR for my kids to see me like this. I couldn't bear to LIVE like this. I would take any chance of getting better, because staying like this just wasn't an option I could accept.

OK, back to the muscle atrophy! Prior to surgery my right hand had shown wasting in several areas. The mound at the base of the thumb had flattened out, the muscles there completely wasted. Most all of the muscles at and near the base of the thumb visibly were atrophied. The pinkie also showed atrophy, as well as the outside edge of the hand, and there was a visible depression or trough between the pinky and ring finger on the back of the hand. Worst of all, I lost a great deal of muscle between the first finger and thumb, front and back, so my thumb falls away from the hand. All this meant I had a very weak pinch grip and a reduced grip strength.

After surgery in Feb 2004 for rib resection, and Sept 2004 for pec minor tenotomy, I noticed very little change over the next year to 18 months. But this is the time frame given to expect for nerves to reasonably regenerate, so that is likely to soon to expect muscle change. I can tell you that by 6 months or so ago, approximately 2 years out from the second surgery, I was noticing a return of some muscles that had been "gone" for more than 3 years. These are mostly some of the muscles at the base of the thumb, and the thenar mound, and I believe the ring side of the pinkie and the palm below it. I know my pinch and grip strength scores are improved.

So I feel happy to have regained what I have, and want to share that you may expect to continue to see gains even this long after surgery. Muscles die because nerves aren't generating power to them. Once nerve power has been re-established, it IS possible for some muscle growth to re-occur. I know I won't regain all the muscle I have lost. Some of the nerve damage is permanent. There has been NO progress between the thumb and first finger - I don't expect there will be - that is too severe. And I don't think the pinkie will be entirely normal again - it too drifts away from the hand unless I consciously pull it in. My hand still shakes, I still drop things - but a little less than before, maybe. And when I look at my hand, I see a little more muscle than before. Small things maybe, but steps in the RIGHT direction for a change!!

The rapid atrophy of the muscles of my dominant hand also helped spur my decision to surgery. At that time my left side was less affected, it's now worse than my right, and the hand is wasting in exactly the same places, although less advanced. The surgeries did help the TOS issues, but my RSD came unglued in response. It became full-body and life again was unbearable. Treatment with experimental IV ketamine helped for months, but ultimitely insurance refused to pay for it. A spinal cord stimulator has brought relief and better quality of life with a daily pain around 4-5 again. This I can cope with! But still I wonder - what do I do about that left side? Watch it waste away and do nothing? Wait til it gets as bad as the right side did? Longer? Til the spinal cord stimulator no longer is effective?

Ok, just meant to post some encouragement, ended up with a bio and a dilemma of my own!! LOL! Take what you want, ignore the rest I guess, focus is not my strong point today obviously!

beth

Alison- So glad it went well for you DId you find any good info regarding the after care?


I see him on thursday....so I can add my update.

Johanna

I cannot "stress" enough that many of the doctors giving us very negative outlook due to atrophy from dennervated muscles (nerve irritation/dysfunction, not disuse from pain guarding), are either hedging their bets, reciting textbooks written during the black death, or frightening us into surgical intervention.

As long as that nerve has some ability to function, even partially, there is hope. Also, even when severe wasting is ocurring, there is hope. I think this BP nerve stuff is so foreign to so many doctors, that they can only fall back on what they learned in med school. They don't run into many cases where there is a chronic/progressive neurological decline resulting in classic wasting/atrophy, because it doesn't usually get that far.

Or, because this pattern of atrophy (thenar, hand intrinsics, ulnar wasting) has some of the "classic" signs of an ulnar nerve (elbow) neuropathy, [some] docs would rather have a "go" at the elbow and hope for the best.

The presence of thenar/hand intrinsics wasting, along with the wasting of ulnar innervated muscles is a pretty good indicator that this isn't a strictly "elbow" problem.

They may, like Dr. Ahn, get a patient that yanked out a nerve root playing baseball at the Dodger game the night before, or avulsed one in a car accident, who is quickly taken to surgery, gets timely intervention, rehab by the best rehab docs in the world, then sends them back to their sport/life, with great success.

Those of us who aren't "obvious" are in a sort of limbo. Not many doctors when they see wasting, are heroic, especially if they cannot "pin" that wasting on some obvious trauma, illness or event.

Back to my point: As long as the nerve is still attached, and has some response, and even while we are waiting for some magical way of knowing where that compression is, and how it is occurring, and what treatment might be appropriate, we can keep moving what we have, as best we can, and retain as much muscle/function as possible. It isn't over until the fat guy sings.