Health Question - Do You Have T.O.S.?

[HEM19X]

Hi,

Those that we know personally will be aware that Kate has been treated for Thoracic Outlet Syndrome for some time now. The last 2 years have been a worrying time for us but 3 operations in the past 6 months now sees us with a lot better understanding of the problem. Unfortunately there has been permanent damage to one vein in her shoulder but there is no health risk - at this time.

The matter came to a head when Kate's arm puffed up to the point where it looked like a fat beef sausage when a clot became lodged in her shoulder. Fast forward over 12 months of "normal' treatment - compression bandages, injections & high dosages of Warfin when we were referred to a vascular surgeon who quickly diagnosed T.O.S.

The treatment is to remove the top rib [which moves up when your arms are raised and compresses the vein/artery on the clavical] and some muscle to open up the passage and allow a normal flow of blood. Over time, the constant compressions damage the blood vessel - Thrombosis

http://vascular.surgery.ucsf.edu/conditions--procedures/thoracic-outlet-syndrome.aspx

While this problem is not common, it is able to be fixed - all be it with surgery, but if we had know about it sooner, we may bave got a better outcome.

The easiest way to check if there is a problem is to take your pulse with your arm below your shoulder, then lift your arm up high & re-check the pulse...no pulse MAY indicate that there is a problem - I am not a doctor.

I do not want to alarm anybody but do hope that no one else here has this in their lives.

Again, to those that have supported us with their kind wishes & thoughts, thanks again.

Kate & Mark


 

[gronk]

I wasn't aware Hem, but hopefully things are now looking a bit brighter for Kate.......and as they say....get out there and enjoy life while you can !!

Cheers Greig

[Roo]

Themissus had this surgery years ago, left arm blew up on a Saturday, Dr at the medical clinic(not our usual Dr) reckoned it was a bee sting....no amount of "no mate it's not" would convince him so after putting up with it for a few hours and things getting worse we took ourselves up to emergency. A few minutes after triage Kim was in a bed for observation and wheels in motion. Not bad for a Saturday night on the Gold Coast. Consultation with vascular surgeon on sunday and a few tests and xrays. Surgery done mid week, careful recovery and soon it was all good. The surgery is done keyhole via your armpit small scar tucked up out of the way.

[themissus]

As Rod (Roo) stated above, been there done that, wasn't pretty and wouldn't want to do it again
I had a subclavian thrombosis back in 2000. Basically the space between my first rib and collar bone is smaller than it should be and in effect was squashing the vein that goes between them and over time a bloody clot formed. The worse thing (other than having a rib removed) was the 4 hourly blood tests. I was in hospital for a week and off work for a month. (The recovery was pretty painful) All good now, it's a mechanical problem so no on going medication required.

Did Kate have the clot in her shoulder for 12 months, did I read that correctly? Hope all is ok now and there is not on going issues down the track.

Cheers Kim