Sinuous Venus thrombosis with prothrombine genetic mutation
Posted , 3 users are following.
hi all,
i am am very happy to have find this forum, I have no idea why I didn't find it last year when I was diagnosed.
like most people I have read, it started with a massive Headache, more like a sudden tsunami only after taking few steps at home, it felt like an explosion in the back on my head to the right, and never stopped although after taking a pain killer the pain slightly lessen but never went away.
after of course being misdiagnosed for simple sever migraine, 5 days later I did a scan which was sent to a neurologist who order me to go to the ER after seeing me and thinking I was having a venous sinus thrombosis. Only way to efficiently confirm it is a MRI.
it was confirmed and they found 4 tiny veins affected with small blood clots.
I have since then been put on warfarin. I was informed only 5 people out of a million ech year has one and that very little research was done on the length of treatment. So I was informed 6-12 months and also informed that the thrombosis might never even dissolved completely is at all.
no risk of it being detached and going elsewhere as the veins being so small, once it's "contained " with the warfarin for and stabilized it just with time become part of the wall of the veins. Oh human science!
so it has now been 13 months, the doctors have informed me of course of the risk to stay on warfarin but ultimately its up to me to stay on it or not.
im 43 and I have a blood genetic mutation called prothrombine heterozygous, meaning only one of my gene is mutating.
like all of you, I fear it comes back once I stop the warfarin, however, what else is there to do really.? I stared to fear falling and hurt my head, then what, I would have bleeding in my brain and die really.
so I decided I will stop the warfarin this month, well actually once I do another MRI which I already 3 times during the past year to see the progress, unfortunately in my case the 4 tiny thrombosis has only slightly got smaller so I was told
so I decided I will stop the warfarin this month, well actually once I do another MRI which I already 3 times during the past year to see the progress, unfortunately in my case the 4 tiny thrombosis has only slightly got smaller so I was told they would t go away, which add to the nervousness.
I have done a lot of research and contacted top notch professors actually doing research about it and all I got is that there is no study done on long term use of warfarin for this type of thrombosis, especially unprovoked ones like me, no accident, fall or health issues like cancer which can make you prone to thrombosis.
So this is pushing me to really stop it this month, if nothing else can actually be done then I may be better off being without it because now the daily worry of the what if I fall, what if I cut myself or simply get into a car accident doesn't weight against the maybe I get another thrombosis or not if that makes sense.
Like the doctor said, I worry a lot about having another one but really it's doing nothing for me to worry, I worry for something that may or may not happen again he said. That's not the way to live.
All I know is that I need to stay well hydrated, to stay moving, try to exercise which I'm nervous about beside walking of course, and try not to stress too much.
I will do another MRI in December to see how my veins are without the warfarin and will go from there.
My father had 2 DVT, he's on a lifetime blood thinner, and grandmother had lots of issues with her veins in older age, so of course that's a concern but the hematologist said that I lived my life without having any issues or thrombosis before, including lifelong use of birth control use which I stopped 6 years ago, pregnancy etc all the triggers potentially for thrombosis and I had nothing.
It's a long post I'm sorry, it just felt good just to write it and feel less alone.
If you have a mutation as well please do share your experience or anyone else for that matter.
Thank you for reading
1 like, 3 replies
kristen94197 carrie32745
Posted
Thank you for your post. I felt the same way about this site since we've experienced similar things.
I think I may have this mutation. I go to the hemotologist next Tuesday to confirm. I vaguely remember the neurologist saying somthing about it but not to worry if it was only a singe gene....there was so much going on. I mostly want to validate that it feels good to have a place to vent. I am status post CVST and it has been 6 weeks since my horrific headache (which is how I got to the ER). I was told my clot was on the right of the sagittal superior sinus. I am on Eliquis (not warfarin) but have little understanding of the different, what to expect, how I am supposed to feel, etc. I am back at work and am very overwhelmed by how "affected" I feel. I am super emotional and feel overwhelmed by everything. I am not so much in pain (I have headaches I am able to manage with tylenol) but just feel different. I have started going on longer walks but am uncomfortable in my body right now. I went to the dentist and my mouth still feels hurt. I got a relaxing hot stone massage and she used light pressure, but now I hurt. I am usually a pretty confident drinker, but after two drinks, my head hurts. So i am frustrated! I guess I am still having a hard time understanding how much this event has affected me and my body.
They also mentioned that becuase I was otherwise healthy, it is probably from extended use of birth control, which I had to suddently stop taking. I guess I should also consider what my body is going through to adjust after being on BC so long.
Anyhow, i will gain more info next Tuesday to better understand if I indeed have this same mutation and what it means.
Thanks for the ability to swap stories.
Best,
Kristen
rebecca77726 carrie32745
Posted
I have an inherited blood disorder also. Its Prothrombin G20210A Mutation. This is caused by a change or mutation in the gene for the blood clotting protein called prothrombin. Meaning I have excess prothrombin. This is also called Factor II. I had a DVT at 22 yrs old. My brother had several for maybe 6 years and at 33 he died from a PE. My dad just had his first clot at 69. It is scary but since you no you've got this, you can research and learn more so hopefully you can try and prevent any reoccuring clots. From my experience, I wouldn't come off those blood thinners though. Your dr should be the one, but I think half the time they are guessing and don't really no.
rebecca77726 carrie32745
Posted
I have the prothrombin gene mutation as well. I'm 44. I had a DVT when I was 22 in the groin. Over the past 20 yrs I've been on and off blood thinners for various reasons, pregnancy or surgery. I've only been taking an aspirin for the past 13 years. I started taking something because my brother died of a PE at age 33. Even though my clot never dissolved, my hematologist thought it was better not to be on blood thinners because I wasn't having any problems. My problems started about 2 years ago and now it's too late and if I could go back and change anything (besides never having this) is that I would have been on blood thinners. Because of the old clot (I'm still not clear on this because as most of you will understand - doctors don't explain things on our level) but because of my old clot, I developed more clots that I never knew about and that also calcified along with scar tissue in that vein - one side my common femoral and iliac vein was 100% blocked and the other side was 70%. MY surgeon was able to put a stent in on the side that was particially blocked but the other side, he was unable to open. This is extremely painful and has changed my active life completely! I'm not trying to scare you or cause anymore anxiety but I was very active, worked out, ate healthy, didn't smoke, I'm underweight and I stay hydrated. I don't know how, why or when this occured. Through research I know that after having a clot you're chances of another increase along with this mutation increases it. I wish there was more research on long term after a DVT. I"ve read about 1 to 2 yrs later but how about 20 or more. And more information on our disorder. If you have any reliable sites, please share. I hope you're okay!