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.

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..

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?

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

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.

Um, did they do an MRI of your neck? Your foot isn't supposed to be involved. I have weak hip flexors after having TOS for ten years but didn't notice problems until getting botox injections in the anterior scalene. I've had five or six MRIs of my neck to rule out my neck over the past ten years, it is beautiful, for the record.


Oh, and. My Doppler was just fine too, for the record....my CT scan wasn't though. I think the Doppler is really only good at diagnosing urgent cases.

Got three MRIs done -one after my accident in 2008, another in 2009 - first brain+cervical, second cervical, third in 2013 - lumbar detailed, cervical screening. Disc bulge at C6-C7, but doctors noted in 2014 its not a cause of my issues. It makes sense, because when I looked at the 2009 report, it says no impingement in foraminal areas, which in hindsight should have been a big flag for me to get away from a doctor who was happily stringing me along saying it was a disc issue. I finally got to know in 2014 that it was not spondylitis but TOS - took 4 doctors to do that. Six years of my life wasted, living in misery without even an accurate diagnosis.

Have you considered any expert bodywork or expert chiropractic care?
I had the best results from a multi modalities chiropractor. ( did ultrasound/deep tissue/LLLT/IF stim)
If you have any sort of accident or fall I really suggest chiropractic and/or upper cervical (atlas/axis/c1 c2) chiro check up.
http://www.upcspine.com/self.htm

This thread and post #1 is crash course in TOS , related conditions and therapies..:D
http://neurotalk.psychcentral.com/thread84.html

Jo*mar, where did you go for your chiro treatment? I am very scared of chiros given they would be touching the spine. But at this point, all out of options I guess.

I more or less came across mine by accident , but I had been reading about chiro care and was considering it.. luckily he was very good and gentle with his technique and happened to be very knowledgeable overall.

I suggest doing web searches in your area and see what kind of websites you find for those near you. If you find a generic looking site or if they say they can fix everything, I'd avoid those.

Look for one with some real information ad a dc that has extra training, uses other modalities like ultrasound, IF stim, low level laser... and perhaps some triggerpoint and massage. The extra upper cervical knowledge is good if you ever had a head hit or whiplash effect. It takes extra training to adjust the c1c2..

If you have recent x rays / MRI it is good to take them so the DC can review, many will require x rays before any tx.

I had to laugh because my PCP sent me for a regular doppler ultrasound to check for circulation issues. They didn't compare it to my non-symptomatic arm, they did check positions (arm down, then raised over my head.) I asked the tech--this is just checking for blood clots, isn't it? She said yep. I know I don't have a blood clot! Grrr....my insurance probably won't approve any more testing, so what now? :confused: They did pay for an emg/ncs, which was....normal. :rolleyes:

Which Doppler?
 

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.

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..