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


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Old 07-17-2014, 10:55 AM #1
danchol danchol is offline
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Default Negative doppler...for now

Hi all.

Currently running the TOS gauntlet; undiagnosed and loads of tests for Vtos. I've got all the classic symptoms, bulging veins in hands, subclavical raised w/heavy pulsing and crazy bulging veins in my left forearm too. The right side started over a year ago and has been manageable, unfortunately, the left followed about three months ago and life's currently on standstill.

Anyways I'm getting off track. I had a doppler Tuesday and the operator suggested no abnormalities or clots and everything was fine. So, now what? Do I just sit around waiting for my condition to worsen until there is such a clot? I have droopy shoulders as a result of weightlifting and things have progressively gotten worse week on week, so I can only imagine it's gonna get much worse until the NHS (in England) decide to take action.

Sadly, my symptoms are playing hide and seek with the drs and only decide to come out on their own terms.

My next steps: get a second opinion from another dr - surely that's all I can do?

Thanks.
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Old 07-17-2014, 12:29 PM #2
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Default Former weight lifters - help for VTOS type symptoms

Did they do the doppler with different arm positions, or while standing?

We have others that used to lift weights here, I hope they will chime in on things that may have helped them..
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Old 07-18-2014, 03:15 AM #3
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Originally Posted by Jo*mar View Post
Did they do the doppler with different arm positions, or while standing?

We have others that used to lift weights here, I hope they will chime in on things that may have helped them..
Thanks for replying Jo*mar. I was sitting down but she had me in all sorts of different positions and she didn't seem concerned in the slightest - I feel as though I'm going to have to get a lot worse before they take me seriously.

My symptoms are due to posture, working at a desk and weight lifting, so, if there's any advice out there from those who used to lift, I'd be so grateful.
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Old 07-21-2014, 06:00 PM #4
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Quote:
Originally Posted by danchol View Post
Thanks for replying Jo*mar. I was sitting down but she had me in all sorts of different positions and she didn't seem concerned in the slightest - I feel as though I'm going to have to get a lot worse before they take me seriously.

My symptoms are due to posture, working at a desk and weight lifting, so, if there's any advice out there from those who used to lift, I'd be so grateful.
What's the range of the Doppler? I got one which states 50% compression is detected! my reaction was what the heck???what if it's below that?
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Old 07-21-2014, 09:46 PM #5
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What's the range of the Doppler? I got one which states 50% compression is detected! my reaction was what the heck???what if it's below that?
Did they tell you what kind of TOS you have? Here us a nice explanation of the different kinds provided compliments of Dr. Thompson: http://surgerydept.wustl.edu/TOS_For_Patients.aspx
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Old 07-22-2014, 02:39 AM #6
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Hi Eight, apologies for the confusion. The range was so large for the doppler, that only 50% is detected, that the presiding Radiologist all was fine since my compression was not 50%. However, after speaking to some other doctors who consecutively ruled out spondylitis and all other issues, TOS was diagnosed.

I have all the classical symptoms - hand pain, tingling, right shoulder seizes up and even my left foot is vibrating/tingling like crazy. I have been spending some time going through all the threads here, and while depressing it is educational. Looks like other folks also have the same issue with foot problems on the same side as TOS.
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Old 05-05-2015, 06:45 AM #7
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Default Which Doppler?

Quote:
Originally Posted by danchol View Post
Hi all.

Currently running the TOS gauntlet; undiagnosed and loads of tests for Vtos. I've got all the classic symptoms, bulging veins in hands, subclavical raised w/heavy pulsing and crazy bulging veins in my left forearm too. The right side started over a year ago and has been manageable, unfortunately, the left followed about three months ago and life's currently on standstill.

Anyways I'm getting off track. I had a doppler Tuesday and the operator suggested no abnormalities or clots and everything was fine. So, now what? Do I just sit around waiting for my condition to worsen until there is such a clot? I have droopy shoulders as a result of weightlifting and things have progressively gotten worse week on week, so I can only imagine it's gonna get much worse until the NHS (in England) decide to take action.

Sadly, my symptoms are playing hide and seek with the drs and only decide to come out on their own terms.

My next steps: get a second opinion from another dr - surely that's all I can do?

Thanks.
Hi there! Are you referring to a Doppler Ultrasound or Doppler Waveform and pulse test? I ask because I passed the Doppler Waveform and pulse tests for TOS 2 years ago and had every vascular surgeon in Baltimore tell me I did not have TOS and then I failed part of the test when I recently took it again. I know this may not help you much but it IS possible to pass it and then fail it later. My symptoms are dynamic too. maybe you should do whatever it takes to fully exasperate your symptoms and THEN get retested? Good luck. This is truly such a hard thing to definitely diagnose.
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Old 05-05-2015, 11:49 AM #8
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Most tests for TOS will come up normal, unless you have anatomical anomalies, or are so far advanced w/TOS that the damages are severe enough to show on testing.

If you had some sort of acute injury that set off TOS, then depending on what something may show on testing..

If your symptoms aren't constant and are not overly severe - I would focus on finding great PT, DC, bodyworkers and a lot of home care/self care.

If you have triggerpoints , poor posture, muscle spasms, hypertrophic muscles - those can be very painful and cause many symptoms - but won't show up on testing.. those need hands on palpation..
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