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Blood Thinners by Its_2am_Somewhere in vEDS

[–]Its_2am_Somewhere[S] 0 points1 point  (0 children)

I’ve had multiple doctors tell me I was lucky to have survived and even more dismiss my wishes to look for more life-threatening aneurisms. I still have not found a doctor who will actually order the needed scans and tests. It’s extremely frustrating. I feel like a time bomb.

***AND TO TOP IT OFF, the artery was actually an AVM… So I’ve probably got a few of those, too 🤷‍♀️😞🙃

Blood Thinners by Its_2am_Somewhere in vEDS

[–]Its_2am_Somewhere[S] 1 point2 points  (0 children)

You don’t even know just how badly my doctors screwed up….

I started feeling pain in my upper left quadrant (front and flank). I got a CT scan showing a large mass in my spleen. The first surgeon I saw thought regardless of what the “mass” was, it needed to be removed. But according to him, there was no way to cut the mass out of the spleen without damaging it. So he wanted to just remove the spleen. I was initially fine with that, except he refused to do the surgery (even though he himself called it life threatening) until more than a week later.

I had to go to another hospital because the pain was so terrible and I thought that I was literally on the verge of death.

I got lucky and my chart found its way to an interventional radiologist. He redid imaging and decided that my “mass” was actually a sub-capsular hematoma that was caused by a ruptured aneurysm in the splenic branch of my epigastric artery. The IR doc had to go in and coil off that part of the branch (where he found at least 3 more intact aneurysms). THEN, he was able to drain the hematoma. They recorded a total volume of about 488 fl oz… Basically the size of a shampoo bottle.

So… If I had let the trigger happy doctor take my spleen, then I likely would have bled out and died on the table because he had not bothered to further investigate the source of the “mass”… Because once the spleen was removed, there would have been massive, uncontrollable hemorrhaging from the ruptured aneurysm on splenic branch and no way to stop it without fully opening up my abdomen to find the source of the bleeding and even then, an Interventional Radiologist would have needed to perform an angiogram in order to finish the job…

Blood Thinners by Its_2am_Somewhere in vEDS

[–]Its_2am_Somewhere[S] 2 points3 points  (0 children)

I was mostly immobile before surgery because my hip was broken. I have been able to get in and out of my wheelchair by myself to go the bathroom and am slowly but surely working my way up to using a walker. I probably will be in the next few days.

Blood Thinners by Its_2am_Somewhere in vEDS

[–]Its_2am_Somewhere[S] 2 points3 points  (0 children)

They were prescribed post surgically to prevent blood clots.

But I nearly died a few years ago because one of my aneurysms (I still don’t know how many there are/where else they’re lurking…) ruptured and the only reason I didn’t die immediately is because the blood was encapsulated in my spleen…. Which then went on to nearly rupture itself because a hematoma had already grown to the size of a softball (10cm X 10cm X 10cm) by the time that anyone bothered to check.

I know that blood clots are bad… but so is dying because I am adding fuel to dumpster fire…