hi, fern,

i wanted to address your question about what type of TOS surgeon to see for which type of TOS. i know it can get confusing and you are not the first person to ask this, believe me. nor am i any kind of expert - far from it! - i am just a patient, like you.

but my understanding is, that most of the top TOS docs are vascular surgeons. they treat all 3 types of TOS patients, as well as cases with "mixed" dx's - in other words, patients who are primarily neuro but with vascular aspects, and vice versa.

then again, there are also doctors performing TOS operations who are neurosurgeons, thoracic surgeons, cardiothoracic surgeons and so on. i think the more important question to ask is maybe how MANY TOS surgeries has the individual performed during their surgical career (you want someone who has done hundreds), as well as what is their success rate, their complication rate and things like that.

also, know that you can ask to speak with a few of your surgeon's TOS patients directly for first-hand accounts of their experiences with that doctor as well as the surgery, its aftermath, the recovery, etc. even with HIPPA laws, if those patients consent to being contacted, that is perfectly permissible and the surgeon should have no problem giving out the contact information (naturally, he's not going to give you anyone he's screwed up, it goes without saying, fern!).

just as an aside... an interesting thing that a neurologist told me once - even if your case is primarily a case of neurogenic TOS (as mine is), nerves have vascular components to them.

every single surgeon i have consulted so far in my quest for truth, justice and pain relief has been a vascular guy: ahn, annest, sanders, weaver. my dx is true neurogenic TOS. although i have to say, the more i learn about the late doctor from OH who coined that phrase, the less inclined i am to even use that terminology...

anyway, my point is, the specialty of the surgeon doesn't necessarily have to line up with the primary aspects of your TOS dx. it doesn't work that way. that would be waaaaay too logical!!! you know how doctors like to keep us patients confucius, fern!

i wish you the very best of luck with everything. vascular institute of the rockies rocks!!!

alison
"Be Brave"

thank you Alison.

Yes, a vascular surgeon either way, definitely. But what I was wondering was this; if I now have vein compression and need the rib out and the vein treated for compression (stent/ balooning...), is it better to go w. a doc who normally takes out the rib than with one like Sanders, who hardly ever does anymore?

I read so many good things about Dr Brantigan. Is VIR Dr Annest? Do the approaches of these 2 drs vary??

wow, picking a TOS surgeon is such a personal choice. don't think you can go wrong with any of the top 3 in denver, though...

you are correct; dr. annest's outfit is the rockies one you mentioned. now i do know that he and dr. charles brantigan used to be partners at one time... so perhaps their approaches are similar (i'm just speculating here, fern, i really have no direct knowledge). but i don't believe the partnership dissolved over anything having to do with the way each man feels about the tx of TOS.

johannakat's thread "how i chose my surgeon," which you will find in the DR's and PT's" sticky up top might give you some valuable insight vis a vis comparing drs. sanders and brantigan in terms of their respective approaches to the TOS monster-...

but if i were you, i'd probably get to denver STAT and grab a consult with both steve and chuck, to see which one is a better fit in both my gut AND in my heart of hearts, and go from there! know what i mean, jelly bean?

dr. annest was my surgeon in 2005 and i can tell you, i think he is the greatest! his TOS program is just outstanding in my book. i ended up staying in denver for almost a month, just to take advantage of the excellent perioperative care offered through his friendly auspices. otherwise, i probably would have stayed home (here in LA) and gone with dr. sam ahn, who i also feel is an excellent TOS surgeon, fern.

but whatever you decide to do, i wish you all the best. PM me if you'd like my phone number; i'd be happy to talk to you and share my experience with you any time you want. this is pretty heavy stuff and you don't have to go through it alone, so know that. OK.

alison
"Be Brave"

Reading Johanna's surgeon reviews again was very helpful before I saw my local surgeon today. He said he Almost NEVER orders Physical Therapy post surgery. He proposes 2 cuts -one under arm and the other in the back to remove the rib. He takes the rib completely. And he splits the scalenes but then leaves then leaves them inside the body to retreat on their own. He also proposes a procedure done maybe the next day to open up the vein with balooning and then put in a stent--done by a radiology dept.

I felt he would do a very good surgery but I want more info than he's comfortable providing and I want the PT, the actual scalene removal and someone who knows the drugs better. Too bad as I'd really like to not travel.

The doctor said not to worry about exercising but when I asked a second time he said I AM at risk for clotting and to avoid vigorous exercise as my vein is 60 precent blocked.

RE the cutting but not removal of scalenes. Has anyone had this done? I heard that "frayed edges" can irritate one if the procedure is done this way.

hope everyone is feeling well today and that the first 2 surguries of our peers went well.

ahhhhhhhhhh!!
ok that covers that! The scalenes need to be put into a place where they will not attach to nerves or vessels and cause even more damage. YOu cant just let them float away! This is only my opinion and I still wonder whre mine is.....

ok so no exercise....right?????
Take care Fern!
Victoria

i'm sure this is an area of hot debate among TOS surgeons and i don't pretend to have the answers, OK?

but i must say, haven't heard of anyone using a posterior approach to get a rib out in a long time (that's an older surgery, used only for certain types of TOS redo's from what i've read). the transaxillary approach alone is more than sufficient to remove the first rib entirely.

the only surgeon that i know of that will do a COMPLETE scalenectomy with the first rib resection is dr. fred weaver at the keck school of medicine in los angeles; all the other top TOS docs i know of do some form or another of a partial scalenectomy:

dr. sam ahn i know takes 25% of the anterior and middle scalenes, for example, while dr. steve annest simply divides the scalene muscles, reattaching the cut end of the middle scalene muscle to the cut end of the first rib, to leave the nerves a smooth surface to glide on. and there's probably a whole spectrum in between the two, fern.

as far as the PT goes, i didn't mean to give you the impression that the denver protocol involved rigorous exercise. far from it! it is very, very gentle and involves a lot of ultrasound, moist heat and other modalities as well as ROM, massage and postural work. basically just retraining you how to start to rebalance the deep intrinsic muscles and to work with some of the scapular stabilizing muscles in a home program. education and self-awareness.

most of it would be appropriate for a vascular case but i can see why your surgeon might be concerned if he thought it would involve "classic" PT exercises. the program dr. annest had me in was specifically developed for TOS'ers who had just had a rib resection, though, so it is very mild. just keeps the blood moving enough to prevent a "frozen shoulder."

but as i've said, i did not have the vascular issues that you do, nor the procedures that you describe... so i really cannot say what would be appropriate. i'm sure if you call VIR they will be happy to answer any questions you may have in that regard, however.

did your surgeon elaborate as to why he would need to make 2 separate entries to remove the rib? i do know the surgeons in denver and LA do not do that. sorry, not trying to start trouble here - just thought you should know that, fern.

alison
"Be Brave"

Ok.... when you go travel for surgery, and stay for a month (or even 2 weeks), where do you stay? I wouldn't think that insurance would cover it.

NOT that I'm really contemplating surgery yet. Just wondering.....

people come from all over to have surgeries in denver (not just TOS'ers, either). the inn at pres/st. luke's has a very affordable set-up for patients and their families, @ around $30 to $40 a night depending on amenities (less depending on your financial circumstances...), and if you stay longer than 2 weeks the rate goes down considerably.

it used to be attached to the hospital before the denver wound care center took over that building, now it's 3 or 4 miles away, at a regular motel i think. st. christopher house is much closer, only a block or 2 away and offers comparable rates. both dr. annest and dr. brantigan use pres/st. lukes.

i'm sure there are similar accommodations near rose hospital, which is the one that dr. sanders operates out of. you are correct, though, that most insurance companies would not cover travel and hotel costs. but if you are a W/C case, those costs ARE reimbursable. in fact, i've seen some of the TOS'ers on here stay at 5 star hotels while visiting the mile-high city... then simply go to the judge and demand those costs back! but to each his own.

i think my hotel bill totaled way less than $700 (and i had family with me). like i said, i was in denver for most of the month of november. it was well worth it to me to be so close to the doc, the hospital, internet access, cafeteria, etc. nothing ritzy but very clean and nice, with parking and kitchen privileges, TV, lobby, books, magazines, tons of friendly people and access to all of the hospital facilities - gift shops, libraries, chapels, you name it.

didn't spend much time in the room itself, as it turned out - but it was really nice during the 4 days i was in the hospital for my daughter to be able to be so close by (much closer than she would have been able to be had we stayed home in spread-out los angeles, actually-) - and once i got released it was nice to have that as a base of operations. we were kept pretty busy with PT, sightseeing, visiting cousins in ft. collins, singing to buffalo and just enjoying the magnificent scenery in CO.

traveling for TOS surgery wasn't my idea of a good thing to do, either, at the time... but i have to say denver is so well set up to receive TOS patients that i do not have a single regret. i am really glad i went. they took excellent care of me there from the moment i stepped off the plane and it really didn't cost all that much more than it would have if i had stayed home, all things considered. the education alone was well worth it!

alison
"Be Brave"

ok really thinking this may be my option....what is a flight to see guys who could really change your life!! really want a 3d mri and see where my scalene went after my 1st rib resection that was done in Hamilton...never really got an answer about that one. I am concerned that it has attached to something it is not supposed to be attached to and it is causing my issues now. Who knows....but I want to find out the answers some way!!!

love and hugs,
Victoria

My type of TOS--
Alison, I was told that I predominately have neurogenic and arterial TOS but that I also have TOS of the subclavian vein. The surgeon told me that this is rare-that people usually have one or the other but not both. However, the rib, scalene and fibrous band removal seems like the treatment for both--even though he showed me that the vein travels a diff path than the nerves and artery.

Two incisions--
I was told by the surgeon that they go in under the arm to get the front part of the rib and then also through the back of the neck to remove the back part of the rib. I also thought this odd-- and a bit disconcerting seeing as I have neck issues and have had prev. neck surgery and also since I don't want to encourage any reason for more scapular pain.

Types of Scalenectomy---
Yes, I realize that there are diff approaches. As a layperson I don't know how to choose--but I did hear fr 1 surgeon that the free-floating approach isn't a good idea; I was told that some people have pain from the jagged edges. (Same goes for jagged edges of partial rib removal.) Since I don't have anything to go on I think it best to choose the surgeon and then go with their approach--excluding the hanging muscle approach. Regardless of being a layperson, it just seems senseless not to cut it out entirely or attach the hanging muscle somewhere!

Vic--where oh where did your scalene go? I am sorry you are in so much pain! I wonder if an ultrasound would be beneficial to you? Did you read Jokat's link to a paper written by Jordan about it? They could see mine on the ultrasound I just had. Also the fibrous bands. The ultrasound is much less expensive and is available in more places.

PT post op...------
Yes thx Alison, I know its a whole diff kind, but wouldn't you expect a 70yo doc who's done these procedures over his career to have figured out the benefit of PT? I asked specifically and he said he Almost Never orders PT unless there is a problem. He didn't know of any neurologists to refer me to , he never heard of Lyrica, he didn't know of any PTs to refer me to. He says he & his dept invented this surgery and I expect it's good--but that newer options are better. And he said that some people don't get better, some get worse, and all he could do is refer them to a pain clinic.

thx much for the input. trying to rest easy and hope to make a decision soon.