Celiac Artery Aneurysm: Anyone else with same illness?

Posted by Jen @jurney01, Jul 23, 2016

Hello! I was recently diagnosis with a celiac artery aneurysm in June 2016. I underwent a embolization w/ coils procedure since the aneurysm had grown while in the hospital. I was trying to reach out to someone who suffered the same illness but have not been lucky. I would like to locate someone with my same illness. I would appreciate any help. Thank you

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@tvickey

My doctor told me that whenever I have surgery that I must always tell the doctors about the Factor 5 - don't know why it is important but I tell them.

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Oh yes! Especially on the legs... I found I had Factor 5 when I had a knee replacement and my entire leg was clotted. This was in 2000, right after the Genome Project was completed, and several specialists were consulted on my case. One sent off a blood sample to Mayo after my telling him my mother and my cousin had serious blood clots and my cousin died of one after knee surgery. Sure enough, Factor 5. I have since had another knee replaced and a broken femur which require having a rod placed inside the bone. These were all fine, but they were carefully watching me.
After I'd been on Xarelto for a couple of years, I had a shunt to drain fluid from my eye inserted. Two different hematologists told me to stay off Xarelto for two days. I had a bleed during the surgery and then about a month later, on the day I was having my stitches out, I had a massive bleed in the eye - the eye actually collapsed at one point. Two surgeries later, we waited for improvement but the optic nerve was damaged. The retina specialist told me later that I should have off Xarelto for TEN days, not two - I had actually taken off four days, just because Xarelto can be scary. This is because there are a huge number of teeny blood vessels and they are all weak, he said. Also my hematologist told me later that Factor 5 makes a particularly hard clot that's very difficult to dissolve. I can see light and dim shapes with that eye but it's not really useful and I am old enough that I haven't managed to adapt my brain to the new situation. No depth perception, mixed dominance. So pay attention to what your doctor says, especially when it involves your eyes...

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