winic1- i cant thank you enough with that information about strokes. I live close to NYC but haven't heard of any good doctors there. Everyone keeps telling me to go to Boston or Demver and that the Ny doctors arent good for this. I'd like to make an appointment with him ? What's it like when you go there for an appointment ? Does he take his time with you ? Is he friendly? What tests does he run ?

You have ATOS? I'm nervous about stroke because i get right sided pulsing in my neck and head. I only get right sided headaches. I'm very concerned. I appreciate you speaking with me. I'm opened to hearing your story. Thanks

"All-Star pitcher J. R. Richard suffered a career-ending stroke from an undiagnosed case of TOS."
from http://en.wikipedia.org/wiki/Thoracic_outlet_syndrome

http://en.wikipedia.org/wiki/J._R._R...son_and_stroke

Note that he was playing professional sports at the time as a baseball pitcher. So we was throwing baseballs as hard as he could with his TOS arm!

So easy does it.

Right sided headaches could be the temporalis muscle in spasm. I get those on my TOS side too:
http://en.wikipedia.org/wiki/File:Il...eck_muscle.jpg

But the pulse sensation does sound like impingement/compression. I used to get that a lot in my neck on the TOS side, but after my PT and chiro stretched out my neck muscles with myofascial release, it has come way down.

Your muscles are harder and stronger than your blood vessels and nerves. You've got to get them relaxed, stretched and natural. Also, several of us here have benefited from getting our first rib adjusted down by a chiro or PT to open more space between it and the clavicle.

HTH.

Adelman takes his time, and is friendly. I came to him with a whole collection of mri's and ct scans already, so they just ran ultrasounds right then and there when I went in (no waiting for testing appointment and then going back). I have a plate and screws in my collarbone, which interfere with the mri and ct scan images to some extent.

I was already prone to migraines before this, but was getting symptoms up the right side of my face & eye consistent with vertebrobasilar insufficiency and subclavian steal. but no one has seen it with the ultrasounds. so, I guess I just say I have symptoms consistent with vbi and ss.

Eye problem has gotten worse to where any close-up work, such as computer, gives me migraines now, rather quickly. recently, right eyelid is not wanting to stay open. So now I'm waiting to get in for testing for myasthenia gravis. oh well.

before Adelman at NYU, went to Yale, went to Columbia Presbyterian, went to Mass G in Boston (very bad experience there), all after local doctors either blew me off ("you don't have a vascular problem, and I'm a vascular surgeon so I know", oh the arrogance!) or passed me off.

eye and head are starting to hurt, so gotta stop now.

Sorry to hear about your condition. I also had symptoms consistent with vbi and ss. I was fortunate that they subsided with a muscle relaxant and PT.

Chroma- I realize anyone can get a stroke and that pitcher had a stroke but my question was , "how likely is it from asking a doctor you may have or reading statistics about it ". So is it likely to get a stroke immediately from ATOS or is it very unlikely ?

Not so much wanting a list of people whove suffered with a stroke but rather how often does that happen and what have your personel doctors said.

Also, winic1-With your obvious case of ATOS your doctor stilll said that its highky unlikely ? Even with headaches?

I also have TMJ but don't think its being caused by TMJ i think its contributing.

I understand what you want, but felt compelled to point out that the case of stroke that I know of was under great effort--as a warning.

I don't recall my vascular surgeon consultation even mentioning stroke. And at the time, I didn't think to ask.

Yale said it was extremely rare to have bloodclots go out into the body, for anybody with vascular tos, not just me. Forget if Columbia was asked or answered, same for Boston. The vbi wasn't diagnosed yet when I went to those. NYU (Adelman) said not something to worry about from the tos. My family history and migraine history is another issue altogether, but there is no evidence (when laying on an ultrasound table) that the tos will cause a stroke in me.

Ophthalmologist diagnosed it based on eye problems, evidently common for it to be found that way. But it hasn't shown up on ultrasounds, which are of course, done laying back/flat on the table. Symptoms come on when I'm up and moving, tho I can't make it happen reproducibly, I'm just doing things, everyday simple life things, when the vision in that eye goes funny or grey, ears start ringing, balance goes screwy, get short of breath, blood pressure & pulse rise, various other things, generally feel "wrongness" coming on, so I go sit down & lay back and wait for whatever it is to pass.

At this point, my attitude is "whatever". The only thing I can do about it is try not to trigger the "wrongness", and sit down as soon as I feel anything going funny, so it doesn't get too bad. My tos is rather unusual, not bone structure, not muscles, not overuse, just scar tissue trapping the vessels, because I make keloids like crazy, inside and out. Have yet to find anyone who knows how to stop scar tissue from forming internally, so surgical intervention is not a good idea, along with the risks of trying to remove tough scar tissue from delicate blood vessels, most likely I would just scar up worse in response.

Sometimes I feel like a time bomb. Hard not to. But, well, whatever, you know? Not like worrying about it is going to make a difference. What I can do is try not to trigger the problems, and stop as soon as I realize I may have.

Your TMJ could indeed be adding to your headaches & all. I don't have tmj, in general, but went through a period of months during my long trek all over New England and NY where neck muscles had tightened up badly (due to accident, surgery, untreated injuries, etc etc), and that started giving me ear aches and jaw aches and even numbness along my jaw and cheek on that side. as all that went on, it would aggravate the tos & vbi symptoms. So, your tmj could be being aggravated secondhand by the tos, and doing things that you normally would not have associated with it. just a thought.

BTW, I got Adelman's name from someone else here who had the rib resection surgery and had a very good outcome. They were from NJ. Sorry, whoever you are, I forget your name. But thanks.

Unfortunately I don't think anyone can really answer your question the way that you would like it answered.

There are about 26 reported cases of stroke in the presence of arterial thoracic outlet syndrome in the medical literature since 1886. All occurred on the right side and it is suggested (but not proven) that severe physical exertion in the right arm leads to backwards flow in the subclavian artery, pushing clot backwards about 5cm into the right common carotid artery. Physiologically this is very difficult to achieve, and almost all the patients described were very young (<30yo).

As nobody knows how many patients with strokes have not been reported, nor how many patients in the world have aTOS, then you neither have an accurate numerator or denominator to work out an incidence of stroke.

All we can say is... it is extremely rare, and only risk factors seem to be right sided arterial TOS in teenagers.