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.

I saw Dr. Donahue at Mass General in late March, now waiting for insurance company to give in. He's unbelievably NICE, patient, thorough. For TOS, he views surgery as the last choice, not the first, he said, explores everything else before deciding on surgery, as he wants to make sure it's the right thing to do, since it's so major. Considering all the idiots I've been sent round and round to, and how I feel about the entire medical "profession" at this point, that I would recommend anyone is kind of incredible.

I'll be calling both Dr Donahue and Messina today. Both are listed in MA on the ATOS website. Donahue appears to be one of the lead Drs. here.

What's scary is that if it weren't for my neurologic symptoms, I probably wouldn't have even uncovered this arterial issue since I don't display any of the arterial TOS symptoms.

Really feel like I need to get a measure of the severity of this "thrill" or bruit. I also wonder if some of us are walking around with these things and just don't know it.

KY

Hi ky, I just read your post and wanted to mention that I have a bruit on my right side despite a scalenectomy I had on that side 20 years ago. I'm not sure if that's the same thing as a thrill or not, but this was seven years ago that a Dr. pointed this out to me. So my point is, even after surgery, the bruit is still there. No one ever told me it was dangerous or anything to worry about.

Coop,

It's my understanding that a thrill is the same thing as a bruit.

That's interesting. And that's exactly what I'm trying to figure out...does the presence of a bruit mean that the only avenue is surgery? Or can you "live with it" as long as your symptoms remain stable? In your case, it looks like you're certainly living with it fine.

Question: Can you feel the bruit? That is, feel the blood flowing when you put your finger over it? It's a strange feeling. Usually, you should just feel a pulse, but in this case, it's almost like you can feel the blood moving through the space and "rubbing" against your finger.

Just got an appt. with Dr Messina. Not until July 18th. Working on Dr Donahue but can't make one until the secretary is back from vacation in 10 days (and how ridiculous is that).

KY

No, I can't really feel anything from the bruit. My hand swells a little sometimes but I don't feel anything weird like you're talking about. When I feel my pulse it seems normal.

From the links I read it seemed like the thrill is the vibration being felt with your fingers on the skin??

I used to have the bruit sounds - inside my head.. a whooshing pulse like sound. when I had the severe spasms.

http://www.google.com/search?q=bruit...ient=firefox-a


hmmm ...
[A bruit is an audible vascular sound associated with turbulent blood flow. Although usually heard with the stethoscope, such sounds may occasionally also be palpated as a thrill. In the head and neck, these auscultatory sounds may originate in the heart (cardiac valvular murmurs radiating to the neck), the cervical arteries (carotid artery bruits), the cervical veins (cervical venous hum), or arteriovenous (AV) connections (intracranial AV malformations). These sounds may be normal, innocent findings (i.e., a venous hum in a child) or may point to underlying pathology (i.e., a carotid artery bruit caused by atherosclerotic stenosis in an adult). Head and neck bruits loom especially important today because physicians encounter arterial occlusive disease more frequently as a greater proportion of our population lives longer.]
http://www.ncbi.nlm.nih.gov/books/NBK289/

Well clearly the Dr here is putting the MRA finding of a compressed subclavian artery together with the thrill and bam...not an innocent finding.

I've read that determining the severity of the situation by pressing on the thrill is art more than science. It's easy to misinterpret. Thus, the additional tests.

If anyone else had / has a bruit I'd be interested to here how this finding was linked to other TOS symptoms.

KY

Hopefully you'll find a surgeon who will be able to tell you the risks of embolism are small. One wonders what the significance of the thrill is if the MRA was ok in normal postures (Unless of course the thrill has only just appeared and wasn't present when the MRA was done)

Did your surgeon not say why he wanted to perform surgery (besides the obvious cash incentive)? Has he started you on aspirin or similar?

Yeah, that certainly would be ideal.

To be honest, I can't remember what the doctor's said when they were assessing the bruit while moving my arm around in different positions. I was so blown away with where the conversation was going (i.e. surgery) that it was hard to stay focused. The MRA clearly showed compression with hands above head, but not with hands below...I know that much.

Couple questions that I think need to be answered. Now, assuming that maybe I've eliminated some of the compression with all the stretching I'm doing:

1. Is it possible that the subclavian artery can heal on it's own?
2. Aren't there blood thinning drugs or other that could be taken to help the blood flow? Or even aspirin?

From my reading, once you get over the 60-70% blockage territory that's bad news. The question is, what do you do if you are under that mark? Other considerations: I don't smoke, my diet is solid, I'm in great cardiovascular shape -- in other words, I'd say that I don't have as many other risk factors as others.

Ultrasound and other tests today. Yippee.

KY

I have a bruit with my arm extended into some ridiculous position. It was visible in a MRA, and on manual feeling and listening. I believe much of the population has one when you contort your arm, so it is NOT isolated to TOS and isn't a diagnostic tool.

Go through the additional tests to explore it more, but I wouldn't base a surgical decision to have something removed from it, especially with no vascular symptoms.

Well, had a bunch of tests done this morning:

* Ultrasound -- in the clavicle region, pec minor, all down the arm.
* Blood Pressure Tests -- Both arms, all over, arms in different positions, ultrasound used here as well.
* Blood Circulation -- Sensors put on fingers for both hands. Was asked to move in different positions to compare baseline vs. positional results.

The administor of the tests couldn't tell me much, but he did tell me this: There is no blockage he can see and everything is flowing normally.

I'm starting to wonder if certain positions and movements cause this specifically vs. all the time. Arms overhead seem to lighten up the subclavian artery on MRA. And when I did the tests this morning with hands overhead, I could see the readings on the screen jump as well. For BOTH sides. The administrator even said that it looks to be a bi-lateral situation (which is somewhat consistent with the MRA that showed a little tightening on the left side vs. a lot more on the right).

Is it possible that I create and display symptoms, but only if I'm moving my arms overhead?

I'm definitely perplexed. I just see a complete disconnect with this Doc's rush to surgery vs. the existence of a bruit vs. the test results today. That said, I'm sure there's more data to be reviewed. Will have to wait and see.

KY

Yes, it seems to be good news though. I wonder whether the surgeons thoughts are much more complex than bruit=turbulent blood flow=risk of embolism without being able to accurately quantify that risk. Maybe he'll offer an opinion that is less surgically orientated after these results. Certainly positional blockage is far lower risk than if it was in all positions, otherwise we would regard blood pressire taking as a high risk procedure !

I sure hope you are right.

I'd gather that if you look at the stats the sum of "MRA with arms up and occlusion" + "bruit" usually = a decent amount of risk if you run the historical numbers. Still, I would never just go right to surgery unless 99% of cases with the above combo indicate surgery as necessary.

What's crazy is that he also said he thinks I should do the left side as well!

KY

So he can pocket double the cash !!!