So as most of you know I am pretty sure I have the vascular form of TOS but trying to switch insurances so I can see a doctor in Denver. I may go to a doctor in manhattan just to make sure I'm not in immediate danger but when it comes to the actual surgery I want only experienced hands like Dr. Brantigan. Anyway, I've been envisioning (even tho I have no diagnosis yet) something running a vein or artery and it damaging the vein or artery. I'm concerned about so many things. I see a lot of you have had surgery. I have read mostly good recoveries for people with just strictly the vascular form.

I'm nervous about a few things... 1) if I travel to see Dr. Brantigan they won't be able to determine what's blocking my circulation or what's going on.
2) I am afraid to get that test.. I think it's called an venous something or other. When they look inside your vein? Is it painful? Are there side effects?
3) how risky is the surgery and will it cure my problem since its only vascular ?
4) how long is the recovery? I'm a teacher can I go straight back to work?
5) since I'm waiting more months to change insurances am I putting myself at a huge risk of blood clots?
6) is it normal how overly worried I am about this?

Oh and my TOS seems directly related to my temple and headaches. It's almost feels like its costing me to have this same headache everyday in the same vein. Is this concerning of a stroke? Am I overreacting? You all have asked questions to reputable doctors and I haven't had te opportunity yet. Any information would be wonderful.

If it is arterial than my Dr says no possible stroke. I have had the surgery on one side so far. Any surgery has risk factors so it is hard to say your outcome. Recovery varies and I can tell you that I have been out a year plus from work as a police officer. Yes it is normal to worry about your health, but you need to try to meditate to relief your stress. I have not had any tests related to the veins, so I can not answer those questions. My TOS is nerve and arteries.

I just wanted to stop by and say hello. I wish you well as you move forward in the trouble you have with TOS. Someone will be able to answer your questions on this forum, I am sure. Many folks on this site have had to deal with all forms of TOS. Keep your spirits up. Being nervous is normal when you have to deal with surgery, stress and pain. NT is created for this purpose. They helped me, and there will be help along for you. Take care, ginnie

An angiogram (aka venogram/arteriogram) can be done with doppler ultrasound and should be painless aside from the IV. They can do it with MRI as well but it takes a lot longer. They often use mild sedation if you are anxious.

I'd advise you to get this done to make sure you aren't putting yourself at risk waiting to see Brantigan.

I actually had the venogram several weeks ago. I'm not good with procedures generally (I get very anxious and tend to faint), but it wasn't too bad at all. I asked for a little bit of a conscious sedative and was glad I did. I was also given lidocaine as a topic analgesic for where they put in the needle, and barely felt anything. They took pictures while my arm was by my side and at 90 degrees out with my elbow bent up. My arm was sore for several days after (and I wasn't allowed to get the bandaid wet for 2-3 days or lift anything for that time), but otherwise I was fine.

This is actually how I was diagnosed with venous TOS. I first was diagnosed with neurogenic, and then my nerve symptoms got significantly better but my arm would swell (minor and no clot) and change color. They were concerned about a clot, which I luckily didn't have, but the doctor showed me where the blood is supposed to flow and how collateral veins had developed because the vein narrowed to the point of near occlusion when my arm was raised. They were also able to see scarring of the vein.

The venogram is considered the "gold standard" for looking at blood flow and clots- much better than a contrast MRI, or so I was told, and I would definitely recommend having it, at least for your peace of mind.

It's still hard for me to accept and I'm worried, but I'm going in for surgery on August 21. I think it's better to know whether or not you have a high clot risk and take care of it than to wait until you actually get a clot...

Good luck!