My TOS -- New Info From Vascular Surgeon (Not Good)
 

Just finished up with a vascular surgeon at Lahey Clinic that the orthopedic handed me off to. He acknowledged the MRA finding of the compression of the sub-clavian artery, but what was more concerning to him was his physical finding of a "thrill."

Essentially, a thrill is something you can feel on the artery upon palpation. Even I could feel it. It indicates turbulent blood flow.

In this surgeon's mind, the mere presence of the thrill has him thinking surgery without question. I clearly found this distrurbing.

I told him that my neurologic symptoms have diminished with stretching and was really hoping that TOS was on its way out. He went on to say that while the neurologic symptoms going away is good, it doesn't mean that the arterial compression has gone away. The thrill confirms this.

Has anyone else run into this? Is the presence of a thrill a key decision point in surgery or no surgery?

I've been battling symptoms for a while so it wouldn't surprise me if the artery is banged up a bit. That said, I'm shocked that therapy of some sort isn't at least being explored...especially since my neurologic symptoms have diminished so rapidly in such a short period of time. I mean, it could be that the "thrill" has diminished as well (although there's no previous data point).

Any insight here would be helpful. From what I have read, surgery to trim the scalenes is risky. If I can avoid it I'd like to exhaust all options.

Thanks.

KY

It looks like there are a few kinds/causes of these - it sounds like some of them would need a specialist to follow up- depending on location of the thrill. I haven't seen that term mentioned here before.

You should remember that some surgeons automatically think surgery before therapy.

I'd definitely get some other opinions before jumping into surgery with the first one to notice this.

He didn't say it was an immediate life or death thing did he?
You probably have had it for awhile.
I'd do some searches on it and see what else you find for info.

[thrill (thril) a vibration felt by the examiner on palpation.
diastolic thrill one felt over the precordium during ventricular diastole in advanced aortic insufficiency.
hydatid thrill one sometimes felt on percussing over a hydatid cyst.
presystolic thrill one felt just before the systole over the apex of the heart.
systolic thrill one felt over the precordium during systole in aortic stenosis, pulmonary stenosis, and ventricular septal defect.
]
http://medical-dictionary.thefreedictionary.com/thrill

and more-
http://www.google.com/search?q=thril...w=1360&bih=636

I'm not in any imminent danger.

Also, I agree that surgeon's like to cut so I want to a) Seek other medical opinions, and b) see if I can stretch my way out of this.

The thrill is above the collarbone right on the subclavian artery (I guess). I can feel it.

What doesn't jive with me is a rush into surgery understanding the following:

* I don't have any coldness in my hands.
* I don't have any blueish colors in my hands.
* There is no heaviness when I lift my arm.
* I have absolutely no trouble using my arm even in overhead positions.
* My neurologic symptoms have diminished on my own with any professional help...you mean to tell me that I shouldn't at least give some consistent therapy a try?

And you're right, I'm sure I've had this for a while. I'd guess a year.

I'm having more imaging done on Friday -- some more specific ultrasounds and such that should shed more light.

In the meantime, I need to figure out the significance of this thrill.

I'd also like to know if anyone knows of any exceptional vascular surgeons in the new england/new york area. I want to get a 2nd (if not third) opinion and I want to make sure I'm dealing with the best in the business. Lahey Clinic here in Burlington, MA is pretty good, but I want to make sure I'm exhausting all options and advice.

Thanks.

KY

I have near total arterial compression when I lift my arms above 90 degrees that come with arm heaviness and the "white hand sign." I've seen 3 surgeons and only one of them said I'd HAVE to have the surgery, but even he said I could wait 5 years if my symptoms are manageable.

I've been a member for a while and have read through numerous new and old threads, and the only doctor who has 100% positive reviews from multiple members is Dr. Donahue at Mass Gen. I recommend using the search function to read up about him.

You are right its not good unfortunately

Did the MRA show compression in relaxed posture or just with the arms up ? The fact you have a thrill is concerning because (Im presuming the thrill is not positional) it suggests you have significant enough compression to cause turbulent blood flow and if so are then at significant risk of embolism (which if happened would require emergency surgery to save your limb). This is a much different situation to someone who has diminished pulses/blood flow in certain positions such as when their hands are placed over their head which is quite common in the population.I would ask the surgeon whether he thinks you are at significant risk of an embolism and also whether he thinks there may be any permanent narrowing of the artery which could be indicated by a non positional thrill.
:(

Sorry,i wish it was better news

Pixified,

That's interesting. I just don't have any of those symptoms at all. I'd really like to give some kind of therapy/posture rehabilitation a shot.

Plexus...the MRA showed the compression ONLY when the arms were up.

I would like to get some kind of metrics around what % blocked this artery is. Maybe the tests Friday will do this. I'm also interested to see if this thrill diminishes at all by my next visit on June 22nd.

And Dr. Donaghue keeps coming up in the MA area. Sounds like a good candidate for a 2nd opinion.

KY

Is your thrill positional ?

Don't think so. It seems to present in any position.

What are the implications of positional vs. non-positional?

KY

If its in any position then its likely to mean continuous narrowing of the artery ,either by continued compression by adjacent structures or previous prolonged compression causing permanent narrowing/changes to the arterial wall. In either case you may be at significant risk of having an embolism (i couldn't tell you what that risk is quantifiably).This is what the surgeon will be worried about

I saw Louis Messina for a second opinion when he was at UC San Francisco. He's now head of Vascular Surgery at University of Massachusetts Medical Center. I believe he's gotten more conservative regarding TOS surgery as the years have gone by. He's probably worth a call.