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!

Last week I saw Dr. Agnew
Asked him if he had heard of Dr. Weaver and new him.
He said he was a very conservative surgeon with TOS.
What you wrote is what Dr. Agnew stated.
Dr. Agnew and Dr. Weaver DO NOT like removing parts of the body.
Correcting the consition is their goal.

And as Dr. Weaver suggested to you
Dr. Agnew has me on a 6 month strict PT program.
Ad if that doesn't do it
Then refine our thoughts about a conservative surgeon.

Again, I had a pectoral minor trigger injection.
Geeze Louise it huurts but well worth it.
Help for so many hours.
Does NOT take away the cervical pain, shoulder and trap pain and head aches.
As he put it, the pecs are so aggravated and on fire that the other muscles are strained trying to hold up my head and neck.

I'm so happy you saw Dr. Weaver.
Maybe we have something here for us conservative peeps.
And on the way to better health.
XXOO

Thanks for the update and what sounds to me like good news.
I agree with being conservative and glad you found a good doctor who will communicate with you.
I hope you find an excellent PT and get some of not lots of pain relief.

Also thanks to Cyndy for the update. You're so strong and been through so much, it is nice to see you here even for a minute or two.

Hope

OK, as promised...

I saw Dr. Weaver this AM.

I am on the computer without Dragon today, so I'll work at this slowly and see if I can't get it all out.

As many of you know I am a bit of a different case than Allison. I have had syptoms for about a year, a very timely diagnosis, good PT, well at least since Dec, However, Allison and I do have the esteemed Dr. Jordan in common, so our surgical referrals were from the same source...she just beat me to the first available appt

I was up front with Weaver about that fact that I was visiting several surgeons, and that I was conflicted about the fact that Ahn and Filler do it "their" way and no other way, and that I was looking for an opbjective opinion about which was right for me. (side note: yes, Filler will send people for rib resection with compelling MRN results, but it doesn't make good business sense for him to always do that....so I don't think his opinion is completely objective)

I am giving you my impressions from the best of my recollection...and it was only this AM, but my brain is wacky and my fingers are wackier...so please forgive anythign that later turns out to be glaringly wrong and know that I am not intentionally saying anything other than what it was, or trying to make anyoen look good or bad, just my layperson impressions.




1. I liked him...nice guy very conservative, as Allison mentioned.

2. No TOS welcome mat...I found his history questionaire to be totally useless for describing my symptoms, (for instance, under nerve symptoms, no box for numbness and tingling?, no body maps to describer pain or anythign else) so I added some of my own as I went along...

3. Had a really really hard time getting my story out in a way that made sense to him or his NP. she sort of asked me questions and made me start at the very beginning and we never really go to the important stuff..then at the end when she got to the box where I listed medications she was like, oh, this is something you take pain meds for? (duh?) Needed an extra hour for that I guess

3. He is definitelycirculation centric. He was very unimpressed with an inability to make my pulse go away (thanks to SuperJoyce and RobertTheWonderWorker for that, I guess ) * and then said that if I didn't have vascular compression he had a hard time beliving there was significant nerve compression unless he saw wasting of the muscle or some other extreme sounding symptom. I didn't get exactly what he thought about numbess and tingling...?

4. Surgical approach:

well...for clarity I'll point out that Filler does not take the rib (sends you to Ahn or someone else for that) cuts a portion of the middle scalene out and does neuroplasty (read: cuts way any crap connected to the nerve and surrounds it in seprafilm) to all the local major nerves. He goes in supraclavicular for almost everyone to do this part, and if you have pain in the front of the shoulder he'll also come in axillary to clear anything connected to the nerves down there.

Ahn on the other hand always takes the first rib and all but the last 4 inches of the middle and anterior scalenes with an axillary approach. in 25% of their patients they come back a year-ish later and remve the top portion of the scalenes with a supraclavicular approach bc those pesky leftovers have managed to reattach somewhere else

Weaver says he likes to go supraclavicular in the first place, says he gets a better view. He has done anterior scalene removal only and is willing but says he has gotten burned a lot doing that, and he really really hates redo's bc the scar tissue makes it much harder. So his preferred approach is to always take the rib, and to take the complete middle and anterior (i think, might have only been anterior) scalenes. Thereby going a bit further than Ahn/Reil, but taking away the 25% chance of second surgery. He also then disconnects anything attached to the nerves both at the scalenes and more distally in front of the shoulder.


4. Though Filler and Reil (Ahn's associate) were both ready to throw me down in the OR and have their way with me, Weaver suggested 3 more monthes of PT because I was experienceing some progress.

I thought this was due in some part to me not communicating correctly that I can't work anymore and I am on pain killers 80% of the time and it seemed to me like that was BAD...but when I pushed him he admitted that he almost never offers to do surgery on the first visit unless there is VERY compelling evidence that you need it and certainly if he couldn't even make my pulse go away I wasn't all that compelling. He went on to say that he knew he was very conservative, but that is just the way he is, kind of take it or leave it.

However, I kind of like his surgical approach, so I asked him another question- which was- If I go to Denver and get another opinion and it was reccommended that this surgery was right for me, would he (Dr Weaver) be willing to do it earlier than three months so that I didn't have to travel to Denver to have it done? He seemed pretty open to doing it sooner in that circumstance. He did have a checklist of caveats like making sure I understood what my real chances were, and had reasonable goals and continued with PT, etc etc.


5. Aftercare support: Unfortunately (Sorry, Alison) I didn't even have a chance to get to things like pain control, support before or after surgery, etc etc. I have to guess that surgery at a teaching hospital will be less comfy than at a private hospital, but I guess I'll be worrying about that later. I definitely didn't get the impression he was a "whole TOS" specialist, since he wasn't thoroughly on board with the neurogenic stuff... but as a surgical specialist I liked him.


He did not have any more tests that he wanted to send me for, since TOS was a "ruled out all the other stuff" diagnosis...just wanted me to go back to PT.


For me that means I'll be off to Denver now, having made the LA rounds.

talk at you all soon,
Johanna





* (Joyce and Robert are my PT and Hellerworker for those unfamiliar)

THANKS for sharing.
From several sources Dr. Weaver doesn't like doing TOS surgeries for the basic fact that they don't work (limited) with the possiblity of more problems and scarring post surgical.

I like the fact he's honest and will work on vascular issues.
Not your usual "cookie cutter" surgeon, huh?
Just goes to show that maybe he's more intelligent than the others knowing TOS surgeries and its complications, scarring and...maybe more painful in the long run without doing all the correct PT as possible.

Saunders, Annest and Brantigan run their own hospital.
Thats why TOSers get better pre and post op care.

My issue is...the Denver docs are so far away
And if something went wrong
It's traveling back and forth
Phone calls back and forth
And what hopsital would take me in case of an emergency and know what to do?

XXOO
hang in there kiddo
You are doing all the right things.