sagittal sinus thrombosis and PE pain

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I had a saggital sinus thrombosis in my early 20's, to this day we dont know why? Then I had a PE in 2013 resulting in life long warfarin, however the same pain i experienced during the 1st PE is still ongoing although it is intermitten but when it comes it comes very strong. ( very scary) Last year I started coughing blood and a CT scan revealed a shadow on my lung which has been dismissed as quite common. This stopped but now has returned, 

I feel like I'm back to square one with this pain and the coughing blood. I initailly thought it was the warfarin as my levels have been very irregular for months. Warfarin levels now sorted and the coughing blood has returned.

Spoke to a Dr on Monday who said the pain I'm experiencing maybe nerve damage? Or similar to phantom pains? They didnt really have a clue.

My question is, Does anyone experience the same pains after having a PE? Will this pain go away or is this something you have to live with? I'm coming up to 2 years from the PE surely this is not normal. 

I have recently been breathless and the pain got worse together with coughing blood I went to hospital and left with NO  answers. 

Any advice would be appreciated. 

thanks 

 

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  • Posted

    I also had a PE (last  year).  In your case, have you seen a pulmonary specialist?  I would be concerned about the fact that you have been coughing up blood and still have no answers.  I have found out throughout my "ordeal" that there is limited knowledge on the subject by GP's and since it's such a serious issue I would hope you could see a pulmonary specialist.
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    • Posted

      Hi

      Thanks for your reply and I hope your doing ok after your PE.

      Yes I've saw a few specialists since then and the haematologist has been great and we now know that I am heterozygous for the prothrombin gene mutation so we know why I'm more prone to clotting.

      Your right the general practitioners at my doctors don't really know a lot and the longer it's gone on I believe there is not Enough knowledge or research into post PE pain.

      I've now tried all anticoagulants which I should be on life long and I had worse symptoms with them than without. The coughing blood continued with them all but as soon as I stop them the coughing blood stops.

      3 blood transfusions later and I started the last attempt of the anticoagulants only to be back to square one. I've only this week decided to stop all medication and take my chances I surely can't feel any worse.

      Hope you've had an easier time with yours and good luck

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    • Posted

      Very sorry. I wonder if there are other forums the specialists have access to. Now, with the Internet, they should have access to top specialists around the world. I sure learned a lot from having such a serious problem. You really have to listen to your body and never give up. It can be scary. I can say that I had excellent care in CA. They diagnosed and took care of me right away. Please take care!
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    • Posted

      Diagnosis was excellent and primary care couldn't fault it, but after care and long term care there is definitely not enough research into this. 

      I am now selfishly listening to my own body and time will tell ! but thank you and you take care too. 

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  • Posted

    Hi Car1, no advice just sharing experiences

    clots and other tissue in suspension are odd, they come in different shapes and sizes, some detach, others are formed as medication wears off (depends on person & cause), and end up in different parts of the body, causing different types of pains, discomfort and other things , for different duration of times.

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