|
Junior Member
|
|
Join Date: Dec 2010
Location: Melbourne Australia
Posts: 83
|
|
|
Junior Member
Join Date: Dec 2010
Location: Melbourne Australia
Posts: 83
|
TOS & Blood Clotting
Hi all. My name is Kira and I am 42 from AustraliaHere is my story so far
I have recently been diadnosed with TOS. I have always had problems with my neck, shoulders and upper back and TOS had never been discussed as I went to the chiropractor to have adjustments to ease the symtoms. Last year I has a PE and the doctors couldn't trace where the original clot came from. I was also diagnosed with Factor V Leiden (FVL) and was put on blood thinners for six months. It was amazing at the time as my headaches and migraines stopped as did my dizziness and aches and pains. Somewhere I new it was all related somehow and mentioned this to my doctor and also got him to remember that my symtoms got worse when I started working in an office environment
Earlier this year the headaches, migrains and soreness all got worse. I went to the Dr and my blood results all seemed fine and I was put on meds to stop the pain. Everytime I went out driving to the local shop's I would have a bad migraine that affected my vision and speach. I got to the stage where I had to stop driving for a while as I didn't like taking so many drugs. I woke one morning and my right arm was so sore to touch or move that my hubby drove me to the local clinic and the Dr said I had an arm clot and sent me to emergency. My blood test showed increased clotting but ultrasound could not find the clot in my arm so the hematologist sent me home. The next morning I went out visiting my grandfather when my lungs started to ache. By the time we got home I was in a bad way and callled the ambulance. I had another PE in the lung and was admitted to hospital and are on blood thinners for life.
My hematologist wasn't interested in finding the reason for my clots so when I felt a little better I asked my GP so refer me to a vascular surgeon. He is taking things slowly and I have only been tested on the right side for TOS and had it confirmed. He has told me that due to my symptoms it's likely that I have TOS on both sides. He is hesitant to remove parts of my 1st rib and has told me not to do anything to aggrivate the arm which is hard not to do as even moving my arm a little causes pain. As I am on thinners he is also reluctant to do further tests as I would have to go off my blood thinners to have the angiogram. My arm again is feeling like I am clotting again even though I am on thinners my INR results are like a yoyo and I think the compression and blood supply being restricted is the cause.
My family Dr told me last week that I am one of thoose people outside the norm which is why a lot of my problems weren't picked up years ago.
I have a lot of symtoms that I am learning are all consistant with others people's experiences and thank god it was not in my head so to speak. I am sure at times that what the Dr's have thought.
I see the vascular surgeon again in February next year and this time I will go armed with everything written down. I see my hematologist just before christmas and he may push the tests to be done sooner given that I am still clotting even with the blood thinners.
Has anyone else here suffered from blood clots with TOS? I would love to hear your experiences
|