Update on atos/vtos surgeons
 

I hope everyone is doing better! I havent been on this forum in a few months but most of you know me as the young woman who has all circulatory issues. I have been desperately trying to see Dr. Brantigan in Colorado. I live in NY and from what I have researched there aren't any reputatble doctors here that are as good as Dr. Brantigan. Luckily, Dr. Brantigan has been emailing me and giving me the best advice he can over the internet. I am sure I have ATOS OR VTOS. What I am unsure about is how are you patients who have seen doctors out of your network able to see them? I have switched health insurances to one that is way more expensive only to find out that I do not have any "out of network!" What am I to do now? Go under the knife of a surgeon that has more unsuccessful outcomes than successful?

What do you New Yorkers do when you have TOS and no doctor to see? Are there any doctors in NY that anyone seriously recommends? BTW a huge pro to seeing Dr. B is he does the diagnosis under a regular physical exam. Since I am so young and have had several CT scans with radiation, my doctor forbids me to get any more radiation. I need a doctor who can diagnose TOS with either a physical exam, MRI, or ultrasound. My symptoms are mainly positional such as, engorged hand veins, pulsing neck and right sided head aches. I recently have a strange black and blue mark on my arm and for those of you who know me on this forum I am a worrier! I am convinced the black and blue is a blood clot! It can easily be a bruise but I cant remember where I got it from...

My health insurance is not picking up any doctors outside of NY. WHat do I do?? Am I in immediate danger? I am afraid I will have a stroke but Dr. Brantigan says it is extremely unlikely and rare. Can I save money and see him next summer or is that chancing it? Does it take a lot time for a clot to form???

I cant sleep my nerves are getting the best of me. If I had a clot wouldnt my arm be swollen? According to Dr. Brantigan, the signs are usually very obvious when there is a clot and they are constant symptoms. They dont go away. My right eye gets swollen also, and I wonder if my circulation is getting cut off will it effect my eye?

I know this may sound ridiculous but its scary because my main symptoms on in my temple and neck... I do not have nerve symptoms..can anypone ease my mind? Im convinced I am going to die, have a stroke, or blood clot. PLease Help!:confused:

Welcome back,

I am bummed for you not being able to see Brantigan even after switching insurance. My advice to you would be to start interviewing the local NY surgeons that are in network for you like many of us have done. You definitely want to get your clotting risk assessed so you don't get into an emergent situation (and relieve some anxiety).

Hi- I am a VTOS'er. I've had bi-lateral first rib resections, first being in March. I can't help a lot with your questions but what jumped out was the blue mark on your arm. Press on it...does it hurt like a bruise? It may ot be one. And contrary to what many think it can take more than one clot to balloon your arm up and turn it all blue. When this happened to me (how we found my VTOS) there were two blood clots in my shoulder/chest. You could actually have one and still be functional. I don't mean to scare you but if they have not performed an ultrasound to look for clots you may want to ask. Much better to know and address...

Stress and anxiety can greatly affect how you feel also.

You've had MRIs, x rays & other TOS type tests to rule in or out other causes & major issues correct?

Some members have had anti anxiety /antidepressants rx'd to help alleviate stress.
Don't be afraid to tell your dr how much emotional distress this is causing you.

I just replied to you on my thread. If it were me, and I HAD to pick a dr in NY, I would go with Dr. Darren Schneider at Weill-Cornell/NY Presbyterian. He is experienced, but not in comparison to Brantigan. Unfortunately, not many doctors have as much experience as the few who are scattered across the country. You can check my thread to read about my experience with him. But it wouldn't hurt to go see him yourself. I would not go with any of the NYU drs.

Laura- I pressed on my black and blue and it hurts sorta to touch it. I had an ultrasound like 6-8 months ago. Nothing was there. If the "bruise" goes away does that mean its not a clot?

I feel so hopeless. There's no doctors here that can help me. It looks like I am just going to wait until something really bad happens to me until I get better insurance. I haven't had a diagnosis yet. I just can't explain my symptoms other than Vascular tos. Can veins on one hand throb and bulge in certain positions and still be normal?!

Is Dr. Darren Schneider not covered by your insurance?

Your family doctor, an urgent care, or an ER should be able to tell you if it is a clot or a bruise. You sound like you are becoming anxious to the point of helplessness. Take control of your situation as it is not hopeless. :hug:

Absolutely, if you are having trouble getting an appt I would definitley go to an urgent care. You will be much better off knowing if this is just a bruise. An ultrasound would show a clot so that would require medical action. It is not at all hopeless, and you're not alone! But what I have learned in my process (which started March 2) you need to be your biggest advocate. No one can tell you how you're feeling, so speak up. :). It will give you relief instead of wondering or waiting. Our imaginations can work against us sometimes, too. Best thoughts, Lauren