Quote:
Originally Posted by Pattymary88
I am assuming they have done all the appropriate genetic testing to make sure you don't have an underlying clotting issue? I have two genetic clotting problems and I am afraid that having this will cause a clot in the end. Mine is my nerves not the vein or the artery so they say. I will hold out my judgement until they look in there and tell me there is nothing else....LOL!
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You have assumed correctly, to a certain point. I have had all genetic testing the doctors could safely do. There are two clotting disorders that can not be tested for while on blood thinners. I will have to be off thinners for 30 to 60 days in order for those tests to be accurate. At this time my doctor does not feel safe taking me off the meds due to the severity of my compression's in both arms. I have 100% blockage in both arms starting at a 90 degree elevation. I will be tested for both of these clotting factors after the second surgery in May.
Before my first clot I had absolutely no symptoms of TOS. I woke one day with my right arm 3 times larger than the other. My hand was so swollen that I had tiny blisters on it from the swelling. An ultrasound was ordered right away which is when the clot was discovered. The report stated that I already had an existing small clot in the same location (which I also hand no symptoms of) and that day there was a new larger clot forming.
I have been told that it is VERY RARE to have clots in both arms and the first thing the doctors blamed the clots on (because they hit one month apart) was a clotting disorder, than it was my cancer. It was not until they were both ruled out that I was given the diagnosis of VTOS.
Do try and press your doctors for a venous ultrasound of both arms to rule clots completely out. Especially if you have clotting factors! As I stated I didn't even know I had a small one before the large one hit. My family doctor was so worried before my diagnosis that she even ordered ultrasounds of my legs. Don't let anyone stop you from getting the answers you deserve. It took me going through a family doctor, 5 Vascular Surgeons, an Internal Medicine Dr, a Cardiologist and two Oncologists (different specialties) as well as reading for countless hours on this forum, to get all my answers. BTW it was my Gyno-Oncologist that suspected VTOS right after the first blood clot was discovered and encouraged me to not give up until I had all the answers.
Good luck to you on your TOS journey, as we all know this is not a fun journey but its forums like this that help us educate each other as well as the medical community.