Arterial TOS?
 

I'm a 22 YO male from Sydney and I have been suffering from TOS symptoms for over 3 years now. After alot of negative testing I have finally been diagnosed with arterial tos on my left side after having a coronary angiogram confirming a complete eclusion of the subclavian artery when arm is elevated and back. I was just seeing if anyone knew what sort of success rate There is with surgery of arterial tos and if there was advice I should now?
Much appreciated,

Do they know what caused it or what factors contributed to it? For example, is it from playing sports, or a cervical rib, ...?

The TOS may be caused by hypertension in one or more of three muscles of neck, chest, and arm near the armpit. Since it affects your subclavian, I'd think it would more likely be trigger points creating hypertension in the scalenes of the lateral neck. Ask your doctor whether you should first have a session with a massage therapist before conducting expensive tests and having surgery. I read on a medical researcher's website (sorry, I don't remember which) that roughly 87% of TOS cases are the result of neuromuscular trigger points. Massage therapy cured mine.

I have had MRI, CT, Xray, CT angio, nerve conduction study all showed nothing out of the ordinary until I had the angiogram in hospital where they go through the groin which showed very clearly the obstruction at the first rib/ posterior scalene area. They told me this affects the subclavian artery and the brachial plexus. Not the vein so much. When my left arm is raised I lose the pulse totally. As for treatment I have been to countless massage therapists, physios, chiros, osteopaths and nothing puts the slightest dent in the pain so I think that something else needs be tried. I have an appointment with a vascular surgeon next week to discuss decompressive surgery. From researching it seems that patients with ATOS symptoms alone without many of the neurological symptoms seem to come out pretty well from surgery. I only suffer from pain in the first rib area and have colour and temperature changes in the left arm. I also get jaw pain, blocked ear and occipital headaches frequently. All these symptoms seem to be magnified when I wear clothes that touch the upper neck region. Sounds funny but it makes it at least 5 times worse. Thanks for the input, it's really hard to find anybody who has the slightest idea of what it feels like.
Ps. We've got it pretty lucky here where most tests are done for free so it hasn't really been an issue.

Did any of the PT, or DCs address the top rib by mobilizing it?
It may be raised and stuck, causing a more pronounced pinching effect.

Esp if you tend to be hyper-mobile, it can fluctuate quite a bit.

When mine was stuck /raised up, I felt like I was almost being partially choked or like a tight turtle neck sweater was on all the time. My symptoms were magnified and had much more use limitations.
Advanced PT dropped mine down and it was such an amazing change for the good. My DC and another PT did follow ups as needed a sit tended to pop up a few times later depending on uses.
But now it stays where it is supposed to be and i can feel if things start to move out of place.

My last Physio focused alot on the 1st rib and trying to mobilise it and also trying to strengthen the scapula muscles but even after mobilizing it still only gave the slightest bit of relief. I persisted with this for about 3 months with the same Physio and then they referred my to a sports physician who got me on to the vascular peeps.

Hi FazDiggity,
I'm very similar to you, including the occipital headaches and jaw pain etc. Arterial and venous occlusions picked up on angiogram. I initially experienced neurological issues but they subsided. My main prob is total loss of pulse in the same positions which brings on fatigue and aches in my arms.
Unfortunately I'm bilateral! I've had a first rib excision op for my right side and due another on the left. I have not yet had my follow up with my surgeon to get the low down on the op however I am already aware that I have regained a strong bloodflow in my right arm when it is raised. What a strange sensation to know that blood is actually reaching the hand when its up or out to the side. I tested myself at home with a blood pressure monitor which clearly showed a pulse on the operated side (arms to the side and raised) and NOTHING on my left.
Despite having obvious post op issues with the scarring, muscle tightness, and slight numbness above the chest I actually feel a sense of relief that at least on one side my blood flow has resumed to normal..... Occlusion freed!!!!:D
My fear of suffering an aneursym outweighed the possibility of nerve damage from the op.
I have unfortunately been left with pulsatile tinnitus in my left ear (unoperated side) which proves that issues remain with my circulation. Also have had some anxiety/depression post op but I have absolutely no qualms about going ahead with a second op to correct this.... Scars above and below my collarbone are a ***** though:(. I guess its a fair trade for NOT suffering the occlusions?:rolleyes:
On a good note, in the past two weeks I have had less headaches/dizziness. :winky:
Best of luck to you.
KEEP STRONG!
SD38:hug:

SD 38,
How long was your recovery? Eg. How long before you could lift something fairly heavy?

I'm now 6 weeks post op, so still too early really.
I'm now doing basics like pouring a full kettle and slow washing up etc. I can still feel quite abit of pulling on the scar tissue however if attempting anything more exertive, this is very unnerving.
So I guess the answer is: no real heavy lifting just yet.
I can probably estimate that I pick up approx 5lbs in weight and then experience the muscles pulling which can then lead to tenderness.
SLOWLY, SLOWLY goes it.:winky:

Did you say unnerving? Was that a pun? :winky: :D

What were your symptoms, just curious? How did they differentiate the pain between Neuro and Aterial. Was it just the color changes?

Supposedly vascular issues fare pretty well with surgical intervention. Neurological, not so much. Haven't seen anyone on here anyway who has had NTOS relieved long term from decompression. Sending you good wishes / luck. Cheers.

Yes well you know what they say Chroma....... If you don't laugh you cry.:D
Well done for picking up on it. LOL:winky:

Another update. I have just had a ultrasound on the subclavian Vein and it appears that it is getting compressed also. The vascular guy has ordered an EMG and then we will book a date for surgery. I think this is only step forward now. Does anyone know if there's a better outcome from the surgery if it's mainly vascular compression?

Yeh sorry. They think there is nerve involvement. I have alot of symptoms but the main ones are : constant dull pain around the scalene collarbone area, coldish/warmish arm and hand, pinky purply arm hand, headches. I have no strength loss or pins and needles so that makes me think less nerve??

http://www.surgery.ucla.edu/vascular...Syndrome.shtml

I have had the EMG which has come back normal. Can I ask anyone with neurogenic TOS about their experience with nerve conduction study/EMG? Like whether you had a positive result?

Mine came back showing only a positive result for mild carpal tunnel??????
So no answers for me or explaination for symptoms.

Usually EMG is normal for many w/TOS.
It is a good test to get done to rule out any specific nerve problems(carpal/ulnar).

Often TOS is dx'd by the ruling out of other possibles.
c spine, carpal /cubital tunnel, shoulder /ortho issues, etc.

Surgery
 

Ok. They have set a date for my surgery on the first of dec.
They're doing a transaxillary first rib resection. The surgeon says there's no guarantees but here's hoping. I will let yous know how it goes.

Do they let you keep the rib? :D

If I get mine removed, I want to put that troublemaker on display for guests.

Faz, I've got the exact same thing as you. Symptoms a little different in that I've got severe pain in my bicep/tricep, axillary area. Initial dx w MR angiogram. Doc yesterday had me simply put both arms up yesterday at 90 degree angles with fists closed for 10 seconds, and left hand was corpse-white in that short time. My occlusion is almost 100 % in the subclavian artery.

I had my pre-op appointment yesterday (with my FANTASTIC doc whom I love, btw) and am having my surgery Tuesday. First rib resection, scalenectomy, and angioplasty of that artery that's squished. He initially said the angio would be done later, but yesterday said because it's the artery and not vein, he can do a quick angiogram while he's in there after the muscle & rib are gone to see if the artery fixes itself or if it needs to be "ballooned" and just do it right then. He's going transaxillary too, so only one 3-4 inch scar at the side of your pec muscle.

One major thing he stresses with all TOS patients is to have the scalene block done before surgery. It won't change the fact that you need surgery, but will give you a VERY good indication of how you'll feel after surgery, i.e., positive block = positive outcome.

Good news: barring any complications, will be driving in two weeks, back to work in two months (possibly) and he'll clear me for any activities I can handle once I'm fully recovered -- including RIDING MY DIRT BIKE!!! He said it's very person-dependent, and because I'm young, healthy, and athletic, he sees no reason I won't be able to return to normal in a few months -- provided I am part of the 92% success rate hes got w ATOS surgery patients and dont have any major complications.

I learned A LOT from him yesterday (spent an hour and a half with us) and feel 100 times better about surgery. It would take me hours to post all of the info he relayed, but if you have any specific questions, I'll try to answer them. We took in two pages of questions, and he thoroughly and patiently answered them all, including whether I can keep my rib! My husband is mortified, but I'm definitely keeping that POS too. :)

Good luck -- I'm full of positive thoughts/energy now. So thankful to have such a fantastic doctor & team. Makes a BIG difference. Well wishes and lots of luck sent your way. :hug:

BigMama6, please keep us posted on your surgery. I have a lot of the same symptoms and my docs are recommending surgery because I also have a blood clotting disorder. I am hoping you surgery goes well and interested to hear about your experience so I can prepare myself!