I'm a 19 y.o female and was diagnosed with a 10cm long blood clot in my upper right arm, and multiple pulmonary embolisms in both lungs in October of last year.

After 6 months of Warfarin treatment, maintaing my INR between 2-3, I was told my clots have not dissolved the way they should have.

A CT scan showed that my first rib and clavicle obstruct the artery in my arm where the clot is, every time i put my arm at a 90 degree angle or higher.

My hematologist has discounted rib removal surgery because of the pain, risks, recovery time etc.

I wanted to know if anyone has had this surgery because of this problem (my specialist said she's never heard of anyone having the surgery done, to fix this problem)

Thanks!

Seek out Vascular surgeon specialists, especially if they are very experienced with TOS. Second opinions or more & probably more testing like a Doppler perhaps.

Many have had the surgery and vascular TOS cases usually has positive outcomes. ( With an expert surgeon )

There are some recent threads posted that have had good results.
the main TOS threads list-
http://neurotalk.psychcentral.com/forum24.html

TOS testing info-
http://neurotalk.psychcentral.com/post580952-11.html

our useful sticky thread full of information-
http://neurotalk.psychcentral.com/thread84-3.html

Wow, I rarely hear of people not getting the surgery once they know that the compression is causing bloodclots.

What does your hematologist recommend as your next course of action then?

You said "A CT scan showed that my first rib and clavicle obstruct the artery in my arm where the clot is..." What does your hematologist say about this?

I don't think hematologists study in depth about structural or compressive issues? Possibly more towards the chemical and diseases of the blood?

did a quick search...

[A medical specialist who treats diseases and disorders of the blood and blood-forming organs.

A physician specialized in disease of blood cells; most hematologists are also board certified in oncology Meat & potatoes diseases Anemia, leukemia, coagulopathies]
http://medical-dictionary.thefreedic...m/hematologist

Definitely seek out a vascular surgeon with TOS expertise. If you let us know your location we can offer some suggestions.

I live in Melbourne, Australia

Hematologist recommended staying on warfarin (blood thinner) for the rest of my life, as rib removal is quite invasive and takes a while to recover from, she's also set up an appt w/ another hematologist for a 2nd opinion

CT scan shows that every time I put my arm above my head - or higher than a 90 degree angle, an artery that runs in between my first rib and clavicle is completely blocked off as the ribs butt up against each other, stopping blood flow

Hope this helps!

Rib removal is not terribly invasive and recovery times (especially for young people) are reasonable. I have had rib resection surgery on both sides and my recovery is going even better than expected.

Maybe you should try and see this guy for another opinion:

This is great. Thanks!
I have a appt next Monday w/ another hematologist for a second opinion. The more I read about rib removal, the more I'm leaning towards it. The side effects and lifestyle changes that comes along with life-long warfarin in take is something I would prefer to avoid.

How long were you out of work for? From what I can see average recovery is about 6-8 weeks

It seems that my return to work range will be 8-12 weeks (I'm currently in week 6). However, I have neurogenic and vascular TOS and it takes a while longer for nerves to recovery. If you have strictly vascular TOS, 6-8 weeks sounds about right for bilateral surgeries.

Hi jlrob6, I must say, I'm a little surprised at your Hematologist's narrow focused response to your condition. A range of tests are used to discount what maybe wrong before final diagnosis, and reading through these forums, you will see nearly everyone has a different experience with it.

I saw on TV the other week that an AFL player has had a similar operation near his clavicle. The younger patients recover quicker, as nospam has mentioned but I'm afraid your Hematologist doesn't know enough to advise you.

I had my rib resection done five weeks ago, just after nospams first one, but the surgeon went in from the front because my issues were many, the simpler ones and less invasive are transaxillary, through the armpit and there are less nerves to disrupt.

The surgery is less common in Australia, but not unheard of. If you look online, an episode of RPA had a rib resection in 2010. This link can give you some easy to understand information as well. http://morphopedics.wikidot.com/thor...utlet-syndrome

I'm in Canberra and my surgeon is a Professor of Vascular Surgery at the ANU, so I'm in good hands. You would do yourself justice if you saw the appropriate specialist. Keep in touch!