Short answer is no. Arterial TOS patient 99% time present with pulsatile mass in supraclavicular area related to the aneurysmal degeneration of subclavian artery. Aneurysms in this are can do two things 1. throw clots down to the finger tips. 2 thrombose and completely occlude and cause limb loss. 1% patient can present with vertebral artery stroke because vert. a comes off subclavian artery when subclavian artery thrombosis clots can got to brain. I have seen it once. Venous TOS in additional to arm swelling can cause pulmonary embolism ( i think of the hansons brothers (the band) had VTOS with PE) . should not give you pulsatile tinnitus.

Hello~ I have a question and thank you doctor for answering questions about TOS.

I had the "TOS MRI/MRA" done in Northern California and on the MRA images, the left side just showed one tiny blood vessel blocked off in the arms up position. The right side, with the arms up, had a complete gap with all the blood vessels in what looked like a 2 inch segment black on the images. It was a dramatic MRI/MRA and the radiologist called me to tell me I had TOS and told me to see particular surgeons for surgical evaluations. I had a severe flare up after the exam. The doctors always said I had neurogenic TOS with a "vascular component". I had a palpable thrill/audible turbulence on physical examination in the supraclavicular area at the base of the SCM. What blood vessels were impinged in the MRI/MRA when my arms were up? Were the blood vessels impinged by the first rib and some other bone?

In my TOS workup, I saw 4 TOS surgeons/experts in various parts of the country and they all advised me to have the rib resection because my impingement was so severe. (So I did~ but only on the R side) I also had multi-crush nerve impingement, and I think my radial tunnel has had a lot of symptoms and may be responsible for many of my most annoying symptoms.

Have you heard of patients who have CRPS from TOS?

Thank you!

I can say I have.
Quite a few of the members I've "met" on the forums since 2004, had or developed RSD/CRPS at some point, also some version of fibromyalgia.

We more or less concluded on our own, that the longer pain & symptoms are going on , the more the body gets overloaded due to the stresses. Thus triggering these other conditions.
This is only our loose theory of course.
But it can't hurt to keep in mind relaxation, stress relief and good nutrition at all times, and more so when hurting.

Thank you Jo*Mar! It is terrible that TOS causes RSD/CRPS. It makes one wonder at how and what causes RSD/CRPS, which previously seemed like a delayed nervous system/autoimmune reaction.

I think the surgery, while relieving the impingement for the most part, stretches the brachial plexus to get the nerves out of the way so that the first rib and the scalene muscles can get taken out. So it kind of damages the nerves while saving them at the same time. I think RSd/CRPS is a kind of nerve damage, there is some kind of sympathetic nerve overstimulation due to the peripheral nerve impingement/damage. Even though I have had the rib taken out, my hand/arm still gets white/cold in flareups similar to what happened pre-surgery, I think the white/cold reaction is a more physio-chemical response by the nerves, not a physical blockage/impingement.

Hello NP4,

I am one of the TOS/RSD/fibro combos. There are quite a few of us, as JoMar mentioned.

I have neuro TOS. I spent several years being pooh-poohed, being told it was all in my head, with the only treatment offered being PT with weightlifting that made everything so much worse. Years of spending 12 to 16 hours a day with ice on the area trying to numb it to get some relief.

About 4 years into my struggle, after finding this forum and suspecting my issue was TOS, I founf a vasc surgeon who made the dx and sent me to a neurologist to start me off with appropriate conservative treatment, including PT with myofascial release. That made a critical difference in my L arm symptoms and with my arm and neck range of motion. No surgery needed....woo hoo ! Now I can do gentle stretching to keep my ROM. As long as I don't overdo things (and even routine housework or grocery shopping is overdoing things), my L arm is okay. Unfortunately, I was left with what feels like a burning golfball just to the left of T1, RSD, and fibro.

is p minor more likely to affect a nerve distribution than say scalenes?

my median nerve distribution is more numb than my ulnar and i dont have cts

seems dangerous to get surgery without having ANY diagnostic tests. i guess im going to have to go back to stretching my armpits out. they feel raw.

Hi Finz,
I'm glad you did not have surgery for neuro TOS. I did not have that singular variety of TOS unfortunately as my blood vessels were being pinched or rather, quite vehemently squashed, by the rather large first rib and bands of fibrosis and other areas of impingement.

I had every diagnostic exam/test available to rule out or rule in TOS. I also saw and got treated by and am still being seen by a neurologist and saw 4 Physical therapists. My hatchet knife pain that was 10/10 above my scapula was not going away, because it was pain from a pinched/squashed nerve. Every diagnostic test was confirmatory for TOS in my situation, it was not a mystery that took a long time to diagnose in my situation, it was very obvious in my situation. I did not have mild TOS disease. If I had the means to have had the surgery earlier, I believe my outcome would have been better. I had to go for too long with damage and fat displacement around the brachial plexus nerves in numerous places. Fat around nerves is protective as you may know.

I don't like posting in forums because I don't like having my personal health history or decisions questioned or attacked or criticized. Everyone is unique and hopefully they make the best decision that is best for them! :-)

I made the right decision for my body. That is the best that each of us can do. It is only the evil insurance people who criticize because they are the penny pinchers who are paid to do that.

I developed a large pulmonary embolism 10 days after rib resection and scalene removal. They searched everywhere but could not find where it originated. I am wondering if what you have stated in the above quote offers any clue.

I'm confused.I went to a vascular surgeon today and they performed a ultrasound test which revealed no venous or arterial TOS. He said its possible that I have NTOS, but unlikely. He said that if the space of the thoracic outlet was large enough to not cause venous or arterial TOS it was unlikely that I had neurological compression. I was under the impression that NTOS was the most common syndrome presenting alone without venous or arterial. if thats the case, his statement would then be wrong? One of my symptoms is, upon elevation of my arm my fingers "lock up" and I am unable to open them until I lower my arm. He said he had never seen TOS present this way, and dismissed it as some other neurological disorder. He said I would have to see a neurologist to make those calls though. So I guess I'm left in further confusion yet again. Has anyone had a negative ultrasound with a positive NTOS diagnosis? And did everyone have to go to a vascular and neurologist separately to rule out the different types of TOS? Any input would be appreciated. Thanks.

Have you had EMG, x rays & MRIs, of all possible areas of concern, to rule out other possible factors?

Expert Physical therapy? Chiropractic?
Maybe a possible entrapped nerve that can be manually relseased?
My chiro adjusted my wrist, elbows, top rib, knee, foot, shoulder.. whenever I had a specific problem and needed those addressed.