So its possible to do physical therapy etc to prevent surgery and fix the venous thoracic outlet syndrome?

I don't know, but you should have a better idea after your appointment.

Unfortunately, there is no standard protocol for conservative treatment of TOS that's known to work in X% of cases. We end up putting together our own programs and sharing notes. I have been helped by PT, OMT & chiro, plus doing things at home including break reminder software, Egoscue exercises and Weisberg exercises.

Morning, I wanted to jump in here and say that I know how you feel. Do a search for my user name (Josepentia) and you can find my posts/read my story. I am also 26, and I didn't have any significant injuries or history that would cause ATOS/VTOS. Yes, I had both, but no neuro involvement. I had my surgery back in April of this year, and although I don't come around on this site much anymore, I still look around to see if i can help here and there. I had the identical symptoms as you, the red flushing hands, the buldging veins, ect. At first my symptoms were like yours in that they only appeared in certain arm positions. Eventually though, the symptoms became constant and it no longer mattered how I stood, walked, slept, sat, drove, ate, etc. Finally I went to the right Dr, had a vascular ultrasound done of the left and right arm and we were ALL able to CLEARLY see what was going on in there. I had a complete obstruction of my left subclavian artery when I raised my left arm up in any direction. I have it in my right arm as well, BTW, but it wasn't AS bad (if you want to think of it like that) but my left thoracic outlet needed surgery urgently. I was at risk of developing a clot the longer I waited. Once I was on the OR table, the surgeon saw that indeed my subclavian vein was involved as well, which was the general idea, but we didn't know for sure until he got in there.
I had the surgery, it was a 100% success, my symptoms are gone and I was back to living a normal life within 2 weeks. Back to doing all normal activities within about two months. Surgery was the best thing that ever happened to me!!

I am pregnant now, due in April '12. In the summer of '12 I will have the right side done. ATOS/VTOS there too.

Don't be scared. Get your tests done, get the right surgeon (I live in AZ BTW) and don't think that every test in the world is needed. I've had MRI's, CT scans, you name it! Ultimately, the vascular ultrasound was THE best quality and showed everything without a doubt.

Research my posts and contact me with any questions,
Jocelyn

Thank you so much for writing me! I wrote you a private message with more details. I am very open to hearing other people who have had or haventg had success for ATOS or VTOS. Anyone know of a fantastic doctor in NEW YORK? Thanks

je na

Hi Jocelyn-

My girlfriend has bilateral ATOS as well. Her pain is as bad on the left as it is on the right.

Right now she is scheduled for surgery on the right side only, and we are worried that her left side symptoms will interfere with her recovery.

It sounds like your right side symptoms were not a problem during your recovery from the first surgery. How advanced were your right side symptoms when the first surgery was done?

Thanks very much,
Dave

Dave,

How was your girlfriend diagnosed with AOS? What tests did they do? I am strugglign with finding a good doctor and I feel no one here is going through the same thing I am because most of the people on this thread do not have true AOS and I think the ones who do havent seen my posts. I need advice and help and it seems your girlfriend and I have the same thing. Unfortunately I cannot do anything about my AOS (by a good doctor) until my new health insurance kicks in and I know SO LITTLE about AOS that who knows if I am at a severe risk of dropping dead from it or getting an aneurysm or stroke from it.

My only symptoms are bulging throbbing veins in certain postions, headaches and neck pain. On a scale 1-10 the pain isnt high its only a 3 or 4. I could live with this but unfortunately it sounds like you can die from AOS or suffer from limb loss. I wish I was able to get statistics on how fast one should get the surgery and can you wait a year to get it ? As long as you get it?

I am freaking out because I cannot go to Dr. Donohue in Boston until II get better insurance.

Does AOS cause brain aneurysms? Anyone who has gone through this I would appreciate any advice or positive feedback if there is any. THank you everyone

I have ATOS on both sides. They found mine with ultrasound, I am sure the fact that I always felt like I was passing out was a huge clue as well. Surgery was done on left side and I will more than likely need the right repaired within a year per the doctor.

Brmr- how'd your first surgery go ? What'd your doctor explain to you about atos ? It's strange because I did a doppler and he didn't really give me much information about results. This is why Im trying to go to Dr. donohue in Boston.

still healing cause i also have nerve compression. the surgery cleared the blood flow on the left side which helped with several symptoms, but i have a ways to go. dr. clair in cleveland has tos so he fully understands. his is mild as he puts it, but he was great.

I thought I would add my recent experience. On the off chance I went to the doctor with an irritating cough and happened to mention that I had a large bruise on my finger ( although no pain) and was having periods when it was numb and cold. She referred me to a hand surgeon the next morning who gave me blood thinners there and then in his office. He pointed out that it was not a bruise but a blood clot that had cut off the blood supply. An angiogram scan showed no blood flow to the righ side when my arm was raised, and within 10 days I was in for surgery. On the positive side, a year on and the removal of my rib and the scalenectomy has solved the problem, however I have 5 years before surgery needed on the other side. I am now aware of what to look for and the surgery is pretty traumatic, however within 3 months I was back on my feet with light gym work. A year on I have numb skin around my collarbone and sensitivity but a good outcome.
Hope this helps