Hello everyone,

I am new on these forums but I have been suffering with thoracic outlet syndrome (and maybe some other conditions besides) for quite a few years. I am still young, just turned 31. But this disabling condition has persisted for nearly my entire adult life. I don't know if I've been treated adequately, or whether my problems are not related primarily to TOS?

I first had first rib resection surgeries using an under the armpit approach back in 2008. This was done on both sides and seemed to provide some benefit which regressed over the course of a year. The surgeries were done a month apart in the Summer of 2008.

I continued to have major pain and dysfuction, primarily vascular symptoms such as swelling, heart palpitations, throbbing headaches, weakness, etc.

I had a complete MRI workup in both 2011 and 2013 with Dr Collins at UCLA. He found major compression with backed up blood flow in my neck presumably due to subclavian vein compression. Apparently my first rib had grown back and I also had cervical ribs and hypertrophied scalene muscles.

I finally got around to having a repeat surgery on my right side in December of 2014. This time however I had very limited relief (if any at all) of my most significant symptoms. This doesn't make much sense at all since this was a more substantial procedure. My first rib, cervical rib AND scalene muscles were removed on my right side. I should have had some significant relief if the findings on Dr Collins report were accurate!

I have been seeing Dr David Agnew in Santa Barbara who is quite experienced in dealing with this condition. At a couple month follow up, he performed the basic pulse test and blood pressure test with my right arm at my side and above my head. At my side, my pulse was a little weak but clearly present while my blood pressure was normal at 120 over 72.

With my right arm raised over my head, my pulse disappeared completely while my blood pressure dropped dramatically to 85 over 45 (something close to that).

There was not ANY improvement over my pre-surgery readings! And no noticeable perceptive improvement in vascular symptoms.

How could this be?

I have to mention that I have also been diagnosed with a rare condition called "Eagle Syndrome", which is where you have an elongated styloid process and/or calcified stylohyoid ligament which can cause pressure or damage to nerves or veins and arteries in your neck. This could be a contributing cause of some of my symptoms.


I am most worried about the vascular symptoms. At times I feel like I will have a stroke or heart attack. I have a pounding, throbbing feeling in my chest and it absolutely feels like there is a significant blockage in my vascular anatomy in my chest, arms or neck. My arms are heavy and weak and this weakness increases on turning my neck or any small amount of exertion.

I've also had these symptoms for a VERY long time at this point. I did not get quick or sufficient treatment early on. I've had these symptoms since at least 2006, maybe even earlier. I worry that I may have caused damage to my veins or an artery that persists despite treatment to relieve the original cause of the compression.

I have had a d-dimer test to test for blood clots and that came back negative. And through the entire course of this illness, I have never tested positive for clots, even though MRI's have consistently shown some level of vascular compression, venous insufficiency or sluggish blood flow in my neck and chest.

Even without clots, is a treatment like venoplasty commonly done for TOS in patients with persistent symptoms of blood flow problems? This has never even been suggested to me even though it is clear that all my worst symptoms are due to insufficient blood flow in my neck and chest.

An alternate possibility is that the Eagle Syndrome has caused a compression of my Carotid or jugular vein which is the primary cause of the findings on Dr Collins MRI, rather than subclavian vein compression.


I currently have a repeat workup with Dr Collins in December to hopefully sort some of this out but my expectation is that the scan will look much like the previous one with no real obvious treatment recommendation. After all, there is nothing left surgically to remove on my right side.

I can do the repeat surgery on my left side, where I still have a cervical rib, regrown first rib and scalene muscles but if I had not much (if any) relief on my surgery on the right side, why would I do the other side?


I don't really know why I haven't been able to get much relief after all these years. I'm still young and my life has really been screwed up, my career stalled and things put on hold while I try and get some effective treatment. I can't work full time and I have had to move back with my parents at this time and rely on family to help me drive to doctors. Driving long distances by myself is problematic because of the persistent vascular problems which lead to short term blurry vision, weakness and difficulty concentrating or having good coordination. I can get around town all right but a lot of my doctors live farther away.

Thanks for listening to this lengthy diatribe. I'm looking for some feedback and suggestions from people who have gone through this or are still dealing with TOS. Maybe my situation doesn't sound exactly like TOS? Are there reasonable treatment options I haven't be exposed to?

Just for reference, my neurologist is Dr David Agnew. My surgeon is Dr Hugh Gelabert at UCLA. And my radiologist is Dr James Collins, also at UCLA. These guys have an EXCELLENT reputation so I doubt the problem is I haven't had competent people trying to help me. But they are also extremely busy and things can get overlooked.

Do your drs consult with each other to help figure out your ongoing issue?
Scar tissue hasn't been mentioned or doesn't seem to be a problem?

If you had the c ribs the whole time, why didn't they remove them during the first surgeries?

For the ribs to grow back, were they not fully removed the first time?
I think in 08 only a partial section cut out was still the standard practice.
Now most remove the whole rib first time around..

Sometimes another independent TOS specialist opinion is a good idea if you can do it.
Just to get fresh eyes on the whole situation..