Thoracic Outlet Syndrome Thoracic Outlet Syndrome/Brachial Plexopathy. In Memory Of DeAnne Marie.

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Old 03-07-2007, 07:58 PM #1
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DiMarie DiMarie is offline
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Exclamation Most important choice is the doctor not the test

I think ultimately it is the choice of doctor and his understanding, knowledge, and his treatment protocol of TOS that is a major factor.
We can have all the test in hand and show up at a doctor and it will be Greek to him unless it is his protocol and specialty.
AS there IS NO protocol to diagx and or treat TOS!
Much literature is written, but an individual doctor thing.

We have to have on our team yes team, a truly knowledgeable doctor of TOS, with maybe a referral to him by our PCP or ortho etc, with a chest x-ray, perhaps an MRI or EMG. But knowing this new doctor is likely going to use his own person to do an EMG, his own type of MRI and facility.

By now the pcp or treating doctor has had you perhaps do PT and see a pain management specialist for injections, and blocks.
All the stops are pulled before surgery. Surgery is the last resort. All other diagx have to be ruled out.

There is not one protocol in diagx TOS, test ordered, or treatment plan.
Test are subjective to interpretation, Sometime even three doctors go about getting the diagx three different ways.
I saw a television show that was classic TOS, symptoms, and test showed a compression, perhaps a tumor. When the patient was opened up it was a mass growing over the heart and Thoracic inlet vascular/neuro structures.

The doctor had to dissect the material off the brachial plexus are and heart. chest wall.
The diagx: A micro infectious bacterial had been inhaled, went to the nose, chest and lungs. While in the body multiplied, it attached to the structures and created a growth, a difficult hardened growth,

Now could you imagine going to a doctor, that they did a few/several, not hundreds of TOS surgery's felt this was what you had and opened you up and found this?
His best bet is to close up and get a cardio and thoracic surgeon real fast....

Sometimes what looks like TOS can be our own bodies anomalies that are structured from the norm, vascular and nerves passing through sites they don’t belong, a misshapen muscle pattern that is not typically seen. TOS injury or repetitive job incites this.

A Great TOS doctor can tentatively, not definitively tell you what kind of TOS you have and why. But, unless you are opened up, it is not a clear a picture. NOT like having appendicitis and needing an operation to remove it.

So basic test are a norm, but to spend tons of physical effort, time, pain and money: wait for a specialist, or treating doctor to order test he utilizes.

If you want particular test done, you may be choosing your doctor by their unique protocol. If they use that tool and other doctors don't you will be going to that doctor, and he will order that test....If you are in the W/C system, you are at the mercy of their doctor until you can legally find your own treating doctor, I think it is six months in PA.

OT:
I can't treat a TOS person, but I can tell looking at them fairly certainly that they have TOS when I meet them....
You can tell a TOSER by:

Rounded shoulders, swan neck from reverse loradosis, hump on the neck from a secondary reaction to the reverse curve (loradosis), holding arm, flinch when doors open or close around them, Instinct to turn around and let the butt catch it, or use the legs or butt to hole open. Use someone to pitch in to cut food, or order easy to cut with a fork food, we use two hand for coffee, Hold arm to keep elbow from rubbing tables, Wiggle, squirm, stand and rub, like a TOS dance!

Don't reach for higher items, push suitcases with feet, lots of warm clothes, GIVE AWAY: wearing cotton gloves in the summer, pillow for our lap in restaurants, pillows in the car.

IF you looked in first aid stuff, heating pad, BioFreeze or rubs, lidocain patches, hot water bottle, bed buddy for microwave, blue ice bags or peas in fridge, heated throw blanket-year round, socks on feet, No gallon size milk containers, gizmos to open jars, fat handles on the cooking utensils, Pans and pots that have two handles, Fat Pens, headsets for our phones we forget to use, Roll out of beds like logs instead of sitting up right and jumping out, Would love a hot soak in the tub, but seems like too much effort,

Sorry to get off the topic, But thoughts of the tosers flow at weird moments..
Seize the moment.
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Old 03-10-2007, 11:22 PM #2
beth beth is offline
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Sea Pines,

I agree with you and Di Marie, as well. The MOST important thing is to find a truly experienced TOS Dr who you feel good about, if you don't truly trust that your Dr knows what he is about, then get to one who does! Once you have, by all means, participate in your care, ask questions, but let the Dr do his job. Each TOS Dr has his own approach, philosophy, preferred tests, people in the field he respects (or not), and until you see that specialist you won't know if that $3000 test was worth the time, money and effort it cost you to obtain it.

But basics - like chest xrays, regular MRI's, EMG's, Dopplers and/or CT with or without contrast, maybe others, MAY be ordered by your PCP or a neurologist or other Dr long before you see a specialist, in order to RULE OUT other dx's - because TOS is still a dx that is considered after other more common dx's are discarded. So you might not have any say over whether or not these tests are ordered either - it's all part of the journey to a TOS dx, unless you happen to have a very obvious c-rib or vascular problem that is spotted very quickly.

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