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Thoracic Outlet Syndrome - just diagnosed

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
How many people with ME does it take to change a lightbulb?

Damn, if this was in German I could make a rare German pun using the word "isoliert" - which means isolated as in lonely and deserted, and also electrically insulated. Oh well, here's my best English effort:

Who cares - as long as they do it QUIETLY and DON'T TURN IT ON.

or how about:

Zero - why on earth would an ME sufferer want to fix a broken lightbulb?
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Even if the term "TOS" is a rag bag of compression problems, couldn't the compression problem be real and cause symptoms that could possibly be corrected? Am curious to hear your opinion of this (separate from Wikipedia LOL).

Yes, but the symptoms bear no relation to any symptoms of ME as far as I can see. They are VERY local to the affected arm.
 

Gingergrrl

Senior Member
Messages
16,171
Yes, but the symptoms bear no relation to any symptoms of ME as far as I can see. They are VERY local to the affected arm.

I wasn't thinking of any connection w/ME vs. just curious if you felt TOS was a true stand alone diagnosis, in and of itself, that could possibly explain chronic pain and weakness in one arm, shoulder, side of neck, etc? Is it worth testing for as part of a differential diagnosis and having a vascular ultrasound, etc?
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
I got a hold of my test report - for the upper venous duplex scan:

In my right arm I have "complete cessation of flow in the subclavian vein at 90 and 180 degrees raised arm maneuver".

In my left arm "complete cessation of flow in the subclavian vein at 90 degrees".

The upper arterial duplex scan:

Right arm: "positive thoracic outlet physiology with velocity increase noted (97-250cm/s) in the subclavian artery at 180 degrees in raised arm maneuver" and "no evidence of atherosclerosis lesion".

Have no idea what velocity of 97-250cm/s indicates.

Left arm: "no evidence of obstruction of cessation of blood flow".

Since I don't have pain or numbness which I would think would be indicative of a nerve version of TOS, I must have the less common TOS of the vein and/or artery.

The heart doc yesterday (so not a TOS specialist) said that I must've had this anomaly my entire life, but since I've had the ME, my body couldn't secretly compensate.

Not sure I buy that. Surely I would've had some prior symptoms. I think that my now very poor posture and Ehler-Danlos symptoms are the cause.
 

Sushi

Moderation Resource Albuquerque
Messages
19,934
Location
Albuquerque
Perhaps I've had undiagnosed TOS and its causing my ME symptoms via hypometabolism of certain areas of my brain and/or cerebellum?
Here is an interesting and related article:
AUTONOMIC DISEASES:
CLINICAL FEATURES AND
LABORATORY EVALUATION http://jnnp.bmj.com/content/74/suppl_3/iii31.full
Christopher J Mathias
Activation of arm muscles, especially when upright (when reaching
upwards, washing dishes, ironing clothes, and pushing a
lawnmower), may increase cerebral symptoms of orthostatic
hypotension by a subclavian steal-like syndrome by further
reducing vertebral and thus brain stem blood flow.
 

Gingergrrl

Senior Member
Messages
16,171
I got a hold of my test report - for the upper venous duplex scan:

So the test you had for TOS is called an "upper venous duplex scan"?

The heart doc yesterday (so not a TOS specialist) said that I must've had this anomaly my entire life, but since I've had the ME, my body couldn't secretly compensate. Not sure I buy that. Surely I would've had some prior symptoms. I think that my now very poor posture and Ehler-Danlos symptoms are the cause.

I am not sure that I buy that explanation either! In my case, my neck was injured in car accident in 2006 and then my arm was injured by Levaquin in 2010. I know these were the triggers but I do not know how the injury is presenting itself now or how everything that I do to overcompensate for it effects the nerves, veins & arteries, etc.
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
So the test you had for TOS is called an "upper venous duplex scan"?

Venous and arterial scan.

There are so many ways this could come about, and there doesn't seem to be a lot of research. No doubt you'll be shocked to learn that for a long while some physicians doubted it even existed.
 

Gingergrrl

Senior Member
Messages
16,171
Venous and arterial scan.

Awesome and thank you!

There are so many ways this could come about, and there doesn't seem to be a lot of research. No doubt you'll be shocked to learn that for a long while some physicians doubted it even existed.

Not shocked at all and this is the story of my life these past four years. Very sad, though, and I hope you find the right treatment and some relief from this.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
I wasn't thinking of any connection w/ME vs. just curious if you felt TOS was a true stand alone diagnosis, in and of itself, that could possibly explain chronic pain and weakness in one arm, shoulder, side of neck, etc? Is it worth testing for as part of a differential diagnosis and having a vascular ultrasound, etc?

It would only be worth testing for if the physician found specific features that suggested it and if they did find specific features I would expect them to make a more precise diagnosis anyway. I never found the term useful in my diagnostic vocabulary. There may be a very small number of people who benefit from surgical intervention but as a cause of pains in the arm region this is very small print and can be easily excluded by a competent clinical assessment in the office.
 

Gingergrrl

Senior Member
Messages
16,171
There may be a very small number of people who benefit from surgical intervention but as a cause of pains in the arm region this is very small print and can be easily excluded by a competent clinical assessment in the office.

If someone did have a compression issue (like TOS or something similar) affecting their arm, are there other treatments besides surgery?