Who the heck is this doctor who says there is no one close to NJ who can do this surgery? Has he never heard of New York City? I'd be cautious of anyone who is so determined to hold on to you.

Look up NYU Langone Medical Center, Vascular Surgery Department--
Dr. Mark A. Adelman,
530 First Avenue
New York, NY 10016
P: (212) 263-5631
F: (212) 263-7722
Very nice guy and not eager to cut when it really shouldn't be done.

Look up Columbia/Presbyterian Hospital--
Dr. Mark Ginsburg
New York Presbyterian Hospital / Columbia
161 Fort Washington Ave Ste 301
New York, NY 10032
(212) 305-3408
Not as personable as Adelman in my experience, but quite confident with this surgery

Look up any of the many other NYC area hospitals. A little farther away is Yale-New Haven, CT.

If you are southern NJ, look down towards Baltimore and DC.

Sometimes you have to dig through their websites a bit to find TOS, it doesn't pop right up at first search. Look through the Vascular surgery and Cardio-Thoracic surgery departments.

It's ridiculous to be told you have to travel a thousand miles from this area to find a competent doctor.

Hi Mcmanisport,
Good luck with the doctor. I hope you get answers.

Oh I know- the more I think about it the more I'd like to stay away from him. Thank you so much for the names and addresses of the two Drs in new york. I am relatively close to Philly but NY is an option too. I did find a Dr who has a wonderful reputation in Baltimore, but unfortunately, she doesnt take my insurance, and neither does the hospital (Johns Hopkins) that was a major bummer.
I have been digging through websites just like you suggested. I went on my insurance web and found all vascular Drs. I then went onto all their personal web pages and noticed some of them said things like "interests: thorasic outlet, pagett schroetter, etc." Those are the ones I looked into and made appts with.
I also came across some who work in the same practice that said "this Dr Does Not see patients for thorasic outlet syndrome" OH well- at least they tell you up front, right?

Thank you again for your input, did you use one of the Drs you mentioned?

I have scar tissue from a broken collarbone, that had to be pinned after months of not healing, wrapped around the subclavian artery and vein. Not your normal type or origin of TOS.

After running through numerous local doctors of various types, got sent to my local hospital's head of vascular surgery who said "I don't believe your MRA" and "You don't have a vascular problem" (only my arm turns blue, loses all feeling and pulse...) and all my other local doctors went "Huh?", I first went to Yale New Haven, where doctor said I needed rib/scalene removal in about 5 minutes into the appointment. But said he would not touch scar tissue (so then what good is....?).

Next went to Dr. Ginsburg at Columbia Presbyterian. He said remove rib, scalenes, scar tissue, rebuild collarbone...(but what is wrong with my collarbone, did they fix it wrong...? We just do that. Have collarbone specialist....). Did not make appointment to see collarbone specialist to find out if needed, too freaked out. He was nice enough, but would have liked a bit more time and explanation. As he described the surgery, almost sounded bored with this routine. Obviously he's comfortable with it.

Looking for middle ground, went to doctor at Mass General in Boston. Said he tries a bunch of other things before going to surgery to make sure it's the right thing to do. Ran their special CT scan. Sounds great. Only he mixed up someone else's records with mine, and had diagnosis & symptoms for me that I don't have. Fortunately found out before he did anything to me. Bye bye...

Went to Dr. Adelman at NYU. After evaluating all my previous tests and some of his own, told me it was indeed scar tissue, and while he is a surgeon and makes his money doing surgery, he would NOT recommend surgery for me. Bone spacing is fine. Muscles are fine. Problem is scar tissue, and trying to cut away scar tissue is more likely to cause damage to healthy tissue (blood vessels, nerves) and there goes my arm, my breathing, etc. Recommended extensive PT to remodel and loosen scar tissue. Called Dr. in my local area (Connecticut) to find a PT for me up here so I didn't have to travel into the city. Listened. Explained. Believed symptoms I have that they could not see (cause of) during testing. I liked him. Which is not something I can say of most of the approx 10 doctors and 8 PT's I had run through before seeing him.

Dr Adelman sounds like a good Dr. I set up three appts with Drs closer to me but I will definitely keep him in mind. Too bad about the Dr that messed up the records- big OOPS! And how about the Dr that says you dont have a vascular problem as he looks at your blue arm.
I'm discovering its a scary world out there in medical land and you really have to be your own advocate nowadays...

Thank you for the article!!
Here is what happened today with Dr Sanders:
Very nice and personable man. If he wasn't so far away I would have gladly seen him in person. He gave me his opinion today (as much as he could without seeing me in person with only diagnostic test results, the paper documents, not the actual CDs) and no exam. He said the vein is shut but has discovered new pathways for the blood to go which is the body's way of making up for the clot being there. Have you heard of this before? He said that is why I can see my veins more prominent on the right side of my chest and my upper right arm. He said I could easily live the rest of my life like this just fine. If the vein decides to recannelize or reopen, then at that point I become the perfect candidate for another clot, and that's when something such as surgery should be done. He suggested another venogram in 2 months. He also said if my discomfort from TOS is very bad then that could warrant surgery and at that point they would repair my vein also- since they are already in there. My discomfort is not quite at that level yet, especially knowing now how uncomfortable recovery may be. Soooo, I have two very different opinions now, though both done strictly over the phone.

Thank you again for the recommendation.

3rd, 4th, and 5th opinions are now all set for the first and second weeks in November. Two in Philly and one on Main Line.

@Mcmanisport - that's good he took the time to answer your questions on the phone. Did they charge you $$ for the consult? That's interesting he feels you could leave well enough alone. How would you know if you needed intervention though? Just deal with it when/if you get another block? That's not comforting, is it?

I realize you had TOS for a while, but how did the actual thrombosis or vascular issue come into play? Were you just working one day, and bammo? Pain? swelling, and discoloration? Did the doctor(s) seem to stress you having the surgery or?

If you want a good directory of surgeons who are well versed in TOS, and surgery I'd look at this list for names:

http://surgery.wustl.edu/TOS_Consortium.aspx

I looked up his email address and sent him a brief email. I told him I had heard he was very good in his field and gave him a short summary of my history. I stated I lived far away but was wondering if he was willing to give me advise as to where to go from here with treatment.

He wrote me back that he'd be happy to talk to me by phone and gave me his number. Totally nice guy, right? And no he didn't charge me. He did suggest I find another occupation and I kinda figured that, as he has seen a lot of patient suffering from this in my line of work. I dont really want to retire at my age, but I dont think I have much of a choice coming up. Yes I am confused and yes I'm glad I have 3 more consults to look forward to in the next 2 weeks. Hopefully they dont confuse me more. lol

I wasnt working when it happened, I woke up one morning and noticed my arm felt tight and a little numb. I thought i slept on it. As the day progressed the numbness and cold progressed and the tight feeling was VERY uncomfortable. Best way to describe the feeling is an overstuffed sausage.

Of course this had to happen on a Sunday so I pushed it off. Monday morning I woke up it was the same, only now my arm was dark pink almost red. It felt like my arm would split open from the tightness. I had to work that day, just in the morning, so on my way in I made an appt with my general practitioner for the afternoon. As I was working I showed my coworkers and most of them thought it looked like a reaction to a spider bite or something like that. I showed my boss and he immediately said it looks to him like I must have a blood clot, told me to call my Dr and tell them that. So I did and they sent me over to an imaging center to have an ultrasound. When I went for the ultrasound the technician was very surprised to find two clots, one in my chest and one in my armpit. The attending Dr. came in and told me to go straight to the hospital, called my husband for me, called the hospital too. When I got there they were ready for me and I got to bypass all the people in the waiting room

The ONLY thing I can think of that I did differently leading up to this is that the week prior, I worked two 10 hour days in a row, and I picked up the Saturday 6 hour shift. I was helping out a friend on vacation. Normally I only work two 4 hour days in a row.