[johannakat]

My concerns most certainly are not the same as other people on this board. My considerations IN ORDER are as follows with the first 2 far exceeding everything else.

An excellent surgeon, who would perform an excellent surgery
To receive the correct surgery for my specific symptoms


only important for surgeons of equal merit on counts 1 and 2:

Good pain control after surgery
Close to home
Good bedisde manner, hospital stay, etc.

Aftercare/support system was not a big issue for me in LA because I have good support form my husband and our parents who will come out to help us for my surgeries.

Insurance was also not a big factor as I am on my own personal insurance (no worker's comp issues)


My primary concern was to figure out what the right procedure was for me, and then get the best available surgeon to do it. I was unsure if a scalenectomy or a rib resection was the right way to go. Therefore I concentrated on visiting surgeons with excellent technical reputations that did the various procedures.

to save time, I eliminated some doctors sight unseen because I thought that visiting them would be a duplication of visiting a similar doctor. For instance, I eliminated Gelabert and Annest sight unseen because I thoughtthat I attained my goals by visiting Ahn and Brantigbut that is the logic I used not to visit those two doctors. It was nothing personal and there wasn't anything particularly that I didn't like about them.

I approach this by visiting doctors In asking which procedure they would suggest, and why. I did not expect to talk any doctor into doing a procedure he didn't want to. I figured that the best approach was to pick a doctor based on which procedure I thought was right for me

Using this logic, I visited the following doctors from Mid March until yesterday....

Dr. Filler
Dr. Ahn
Dr. Weaver
Dr. Brantigan
Dr. Sanders

more to come....

[Jomar]

I like the logical and systematic way you did this- i think this will a great thread for many new to idea of surgery and surgeons and how to approach the decision.

[johannakat]

Thansk, Jo

So moving on then....

Saw Dr Ahn First...except that I didn't really see him, I saw his junior associate Dr Reil. Since my primary Neuro is Dr. Jordan and they all work together frequently, basically I was told on the first visit that they would want an SSEP to rule out Carpal Tunnel and Ulnar Tunnel, a left scalene block to confirm the dx on the left side (i wasn't too jazzed about this bc they wanted to do it with no anestesia...) but that basically, sure they'd be happy to remove my rib transaxiallarily (sp?), and they removed all but 4" of the middle and anterior scalene muscles in that operation. I was also told 25% of those patients have to come back a year later for complete removal of those scalenes with is done supraclavicularly.

I was not really in the mood for 25% chance of second surgery.

They also made recovery sound like a breeze...oh yeah
i'd be up and around and happy in a week,
no lifting restrictions,
could drive as soon as i wasn't on narcotics anymore (2weeks?),
insurance wouldn't pay for a second night in the hospital so i only got one but I wouldn't care, i'd be ready and happy to go home...
and finally, they could do the second side 4-6 weeks after the initial procedure but I'd feel "pretty beat up"

At the time is sounded so easy...sign me up, right? Ahn is a good surgeon, surely it will be fine.

Well, in talking with my neuro later he said maybe to expect more like 6 weeks to three months recovery (what surgeon who wants you to feel comfy is going to tell you that straight up?) and suggested that all surgeons have better memories for their easy patients and that they tend to refer the hard ones to someone else so they aren't sitting around the waiting room complaining about how miserable they are


I got the SSEP, not too painful, came back normal. Put off the left scalene block as long as possible hoping to talk them out of it. I was eventually successful in that when I met Dr Ahn directly, but I'll tell how and why later...

As a side note, Dr. Ahn's office runs very efficiently. Michael, the guy at the front desk, is super friendly and always knows who I am when I walk in the door. He has gotten anything I needed super fast and always with a smile. My appointments were always pretty much on time as well.

[johannakat]

I also saw Dr Filler early on in the process. As the lone scalenectomy provider in LA of course he was going to be on my list.

Surgery aside, I was definitely curious about the MR Neurography. For me, I think it has been the most successful test next to Dr. Jordan's ultrasound in finding the anatomical anomalies.

I went to see him twice in his office, and he ran miserably late both times. The second time I had called ahead and arrived late so it wasn't a big deal. The first time I was running late myself and got to his office all smelly because I hadn't had time to take a shower....I wasn't any better after waiting two hours for him, but I guess he got what he deserved!!!

SHeila was very nice, the Nurse practitioner, she took my history and then went to report to him. It felt a little disjointed, though....like I didn't know how much she had told him of what i told her. HE also talked to the ceiling the whole time i was there which was kind of annoying...however, i wokr at a company of very bright but socially maladjusted engineers, so i am sort of used to this stuff.

I was somewhat alarmed that after talking to me that first appt, he seemed willing to operate without even taking an MR neurography. That was my first warning sign. In any case, I had just had my second round of Botox injections at the time, so I wasn't quite ready to jump into the operating room yet. We agreed that in six to eight weeks I would have an MR neurography of both sides of the brachial plexus and see what it showed.

When he came time to schedule and the MRN. I had to ask the office to change the order for both sides of the brachial plexus, because as some other doctors have done in the past he was convinced that I only have problems on the right I'm not sure what it is that I say that give people the impression. But seeing as how I'm having the laft side operated on first I certainly don't think my symptoms are only on the right.

The neurography was pretty cool. It showed distortion of the course of the brachial plexus consistent with thoracic outlet syndrome on both side. It also showed some irritation of C8 on the left side, which is the nerve that comes out at the cervical and thoracic spine junction.

Interestingly, the approxiamte location of C8 is where I have the constant butcher knife pain that never goes away so for me. I think the MR neurography was dead on.

Also, interestingly, Dr. Riel was very happy to talk about the neurography when I brought the results to their office probably this is because it supported letting them operate on me :P

In the end plan met with Dr. filler to discuss the results of my neurography's, I was unimpressed with his ideas and a few things that you mentioned "remembering" that didn't make it into the report of my scans, and he was basing his surgical recommendations on these "memories." Seems to me that if it was that important enough to base a surgical recommendation on, it should have been in the report.

He did reccomend a scalenectomy and neuroplasty, and said that the neurography did not show that my rib was causing any compression. He would come in supraclavicularly and cut out a few inches of scalene muscle, clean up the nerves, wrap them in seprafilm, clise me up, then come in axiallarily adn lean up and scar tissue in the distal portion of the brachial plexus (front of shoulder area)

The other thing that bothered me about Dr. filler was that his scalenectomy only involves cutting out a couple inches of one scalene muscles seems like that's a lot of muscle to leave behind to reattach somewhere else. It bothered me more after I thought about how doctor Ahn does his surgery-he's leaving 4 inches of muscle and 25% of the time still going back in to remove it.

The other thing that finally killed all thoughts of having surgery with Dr. filler was that I told him I couldn't possibly make arrangements to have surgery with him unless he could tell me how much I was going to have to pay out of my own pocket. His office offered to call Blue Cross of California with procedure codes and charges. Now I happen to know the Blue Cross of California is especially difficult about this kind of thing when you call them and say here's the procedure coding here's the charge for whatever reason they can't tell you how much you're going to end up having to pay. However, I don't feel like his office made a particularly strong effort to get that information for me and I specifically told him I couldn't sign up for surgery without it.

So filler was probably my first elimination. However, I found the neurography results to be very useful.

[johannakat]

I've already made a very long post about Dr. Weaver elsewhere, so I'll make this one kind of brief.

Dr. Weaver is a vascular surgeon at USC. I went to see him and found him definitely to be very vascular oriented. I think that he is a good surgeon and experience it during TOS surgery, but really concentrates on vascular issues and maybe isn't so much of a nerve guy.


I only met him once, so I could be wrong, and he didn't have any special testing to send me for. He did suggest that a physical therapy was hoping maybe I should go for three more months and then come back and see, which I didn't really want to hear because frankly I was quite ready for surgery at this point. His approach is a supraclavicular rib resection with complete removal of the middle and interior scalene muscles. At the time I thought this sounded like a pretty good deal because eliminated the 25% chance of the second surgery.

I was pretty keen on him, but it took forever to get an appointment. My trip to Denver was a little later than I had hoped, and he said that if the Denver docs all said they were ready to operate he would be willing to operate that I didn't have enough time to get that appointment and get back in to talk to him and think about it. I did have the same problem with his nurse practitioner does a good fillers nurse practitioner. I didn't feel like she understood TOS. I didn't feel like she took a good history, and I didn't feel like Dr. Weaver gave my records The kind of going over that I would've expected. I think she picked and chose when he looked at and personally I think she missed some of the highlights.

Also, after my Denver trip and the left scalene with Dr. Sanders. I think I realized that nerve compression was a bigger factor than I had previously realized. So even if I had time to pursue Dr. Weaver, given that he's not much of a nerve guy I might have still decided to go elsewhere.

[Jomar]

This thread & list was started in 2006 - so some links may be expired and some providers may be retired or closed their practice by the time you are reading here..so a web search to check for current info of names listed might be a good idea.



If you find helpful practitioners for TOS, please add their name & contact info/location/website to this thread.