Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi,
My sister who gave birth 9 days ago has just been diagnosed with "Saggital Venus Thrombosis" - basically a clot has formed on her brain. She has been advised that this was probably caused by her pregnancy (was ill with very low blood pressure throughout, so was not as mobile as she normally would be).
Does anyone know anything about this type of clot?
I myself had massive bilateral PE 2.5 years ago & so am wondering if there is any heriditary connection? At the time, the doctors did say they were testing my blood, but to be honest, I really don't know exactly what they did & didn't test for. Also does being on heparin or warfarin affect these test results. I'm now off the warfarin but am on aspirin. Should I get re-tested - if so what test should I ask for? (my sister's being tested, but is already on heparin so wondering if this will affect her results?)
Thank you so much for your help. It's funny, I'd come to terms with my PE - & actually throughout kept really positive, seeing how lucky I was to survive, but I'm really struggling with the thoughts that my little sister could have been taken from us, leaving my 2 little nephews without a mother.
Any thoughts would be most welcome
x
My sister who gave birth 9 days ago has just been diagnosed with "Saggital Venus Thrombosis" - basically a clot has formed on her brain. She has been advised that this was probably caused by her pregnancy (was ill with very low blood pressure throughout, so was not as mobile as she normally would be).
Does anyone know anything about this type of clot?
I myself had massive bilateral PE 2.5 years ago & so am wondering if there is any heriditary connection? At the time, the doctors did say they were testing my blood, but to be honest, I really don't know exactly what they did & didn't test for. Also does being on heparin or warfarin affect these test results. I'm now off the warfarin but am on aspirin. Should I get re-tested - if so what test should I ask for? (my sister's being tested, but is already on heparin so wondering if this will affect her results?)
Thank you so much for your help. It's funny, I'd come to terms with my PE - & actually throughout kept really positive, seeing how lucky I was to survive, but I'm really struggling with the thoughts that my little sister could have been taken from us, leaving my 2 little nephews without a mother.
Any thoughts would be most welcome
x
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to answer a few of your questions:
* yes, there can be a hereditary factor in clotting. i'd recommend that you contact your dr about what they tested you for and what the results were - but...
* yes, warfarin at least can interfere w the test results. in my case, my drs will not test me for genetic factors until i'm off the warfarin in a few months. i don't know whether heparin interferes w test results and i recommend you get advice about this from your coumadin clinic, if you have one, a pulmonologist or a hemotologist - someone w specific experience w clots.
* here's a link that discusses some of the genetic factors to be tested for: http://www.livestrong.com/article/161536-list-of-hereditary-diseases-from-blood-clots/
good luck to both you and your sister!
There's a panel of genetic test tests that most hematologists do, and it's pretty standard. You may want to reach out to your hematologist or find one and see what they think.I don't know what benefit there would be really to you retesting again, except that it may shed light on why both of you clotted. Do you know what caused your clots?
And yeah, it's so much easier to go through something yourself that to see someone you love go through it. I can totally relate.
Thanks for your speedy responses. Think it is worth getting re-tested. When I'd my clots, I don't remember what they tested me for as I was really not with it.
I've 2 brothers as well, both of whom have serious back problems, due to injury, so at times are not very mobile - so would be great to know if it is heriditary so we can take precautions!
My PE was attributed to broken ankle / YASMIN, so after 13 months on warfarin I'm on aspirin. For my sister, docs think was pregnancy, but seems a bit too co-incidental to me and given that we were both so lucky, I don't want any more of my family to be taking any unnecessary chances!
Thanks for your support!
Has your sister ever been checked for a patent foramen ovale (PFO)? I ask this because I had a stroke, caused by a clot, and the docs at the time found that I also had a PFO. As one doc explained, most clots wind up in the lungs. With a PFO (a hole between the upper two chambers of the heart), a clot can pass through the hole and end up in the brain. I know that clots can get to the brain in other ways, but it may be something to consider.
Estimates are that about 25 percent of the population has the hole (which normally closes after birth with the first breath), and about 60% of those who have it suffer no ill effects. It is something worth checking.
I had my PFO closed via open heart surgery, but now they do it through a device inserted via catheter (the device was still experimental when I had the closure and there was no data regarding device failure, so I chose not to use it). The PFO is easy to find with a heart echo with dye.
thanks for your suggestion - certainly something to ask the doctors. Apparently this is quite rare and they believe it was caused by pregnancy but are looking into if other things may have caused it.
Keep well!