What type of tos did you have?

Neuro and venous TOS. Diagnosed 6 years ago with nTos but recently had a 3d MRI at UCLA but do not have final report. So my guess is venous TOS.

MRA showed compression of jugular vein by manubrium and high signal in sigmoid sinus. Also compression of BP in thoracic outlet and other vascular compression. I'm waiting for the radiologists report. It was done last week.

i am actually trying to drive this point across in another thread. VTOS and NTOS are two totally different disease processed. VTOS is by definition compression of the subclavian vein at costoclavicular space ( the space between your collar bone and your first rib ) NTOS is the compression of brachial plexus in scalene triangle (triangle consist of anterior scalene, middle scalene and first rib ) These are two separate spaces. In my experience ( close to 260 cases in the past two years). the best diagnostic test is a invasive procedure called venogram ( done by a catheter in the affected arm vein and contrast dye injected under x-ray ) this is the gold standard for VTOS dx. MRI or MRV or MRA is not the test of choice. the universal symptom of VTOS( aka effort thrombosis) is arm swelling.

Thank you for the clarification. I am just now trying to get a correct diagnosis. Originally this was WC and spent more time with attorneys and retirement boards reviews than physicians. Yes I know I have ntos and aware of the scalene triangle compression. Recently developed vascular symptoms. Have yet to see a vascular surgeon. I was side tracked with a MCA aneurysm clip and finding a cause of debilatating pulsatile tinnitus. Do not have Dural fistula ruled by Cerebral angiogram.
So in general can or is pulsatile tinnitus a symptom of arterial or venous TOS.

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.