Hello my friend...it must be so frustrating to have no answers. Well do you remember the guy who had the portal vein clots? Perhaps you have a genetic abnormality with some of the abdominal ducts, such as pancreatic, gall bladder, liver...my mother has a birth defect which has resulted in very narrowed ducts to her pancreas. Its a long shot. How do they know that your PE's have not originated in the legs? Have they ruled out pulmonary disease such as histoplasmosis, or eochinophelia? Just some thoughts, I wish I could help. I am here for you.

Hi there, I'm sorry I can't really add anything to help you either. My clotting is assumed to have started in my pelvic area, but I have to say that I really think there should be some better way to screen for this or something. Did you have any symptoms in your extremities indicating DVT before you got the PE? I ask this because I had excruciating leg pain, had just had a very difficult delivery of my son and knew DVT was a risk, went to ER got u/s and was negative but had elevated d-dimer. By the time someone took me seriously again it was a week later, my entire left leg had clotted and I had massive PE to boot! I was told that the first u/s was negative because although the clot was already present it was in the pelvic area and too high for the u/s to see it. This is very frustrating for me since I feel like this all could have been avoided if a CT had been done on my pelvis. TwinMom in the PE group had the same thing happen to her also post-partum. I know your situation is different, but I wonder why there are not better ways to check for pelvic clotting, since it is said to account for a high number of PEs.

I hope everything goes well with your testing and you get some satisfactory answers.

Sarah

Hello,

My DVT was in my left femoral, internal, external, and common iliac veins. I'm not sure where it started, but the initial ultrasound showed slow flow and a CT Scan followed to confirm the clots.

So far I have tested negative for Genetics, but need to have my Protein C & S repeated when I'm off warfarin.

I am on the wait list for a pelvic MRV. This is an MRI of the pelvic veins, iliacs, to check for May Thurner Syndrome. I believe it is an anatomical abnormality that occurs when the arteries put pressure on the pelvic veins thus causing a clot.

This may be something worth look into??

Hi Ferr,
I know all to well how frustrating it is to continue to clot while on anticoagulants. Right now I am on Lovenox because of the same problem, although I luckily haven't had a PE when I've reclotted. I have a home INR monitor and tried to stay around 3.0 while on coumadin, but sometimes it would go below 2.5 and so my hematologist thought it would be more reliable to start Lovenox. She has me on one shot a day rather than twice daily shots. I don't know how long I will be able to stay on it though, because my liver enzymes have been elevated since I've started on it a month ago.
Have you had any lower abdominal pain or discomfort/ or pressure?
I had ovarian torsion 2 years ago (when your ovary is twisted and the blood supply to the ovary gets cut off with the twisting). They said that that can cause pulmonary embolisms. Not to gross you out, but it felt kind of like I was very constipated and there was an uncomfortable pressure when I'd first sit down. I think you would be aware of the pain if you had this problem though. But thought I'd mention it anyway, because I didn't have the excruciating pain that others have and so you might be a rare bird too. Seems I'm always the 1% wierd things happen to. I just wish my luck would work that way with the lottery too! (-: Maybe we should buy a lottery ticket together?
Take Care.
Barb

Oh Barb what a wonderful idea, (The Lottery Ticket) I went in for my pelvic and lower abdomen cat scan on Friday and after drinking at least 14 gallons of Barium they managed to get all the pictures (about 300 or so) they also did some with IV enhancement. I got a copy of the disc and have a copy of the report coming in the mail but in the meantime I sit and wait until my Doctor calls me. I looked at the pictures on the disc and can't figure them out at all LOL but then what do you expect considering I got my medical degree in the cracker jacks box. I'll let you all know what they find out. Thanks all for the suggestions and I will mention every one of them to my doctor as I am so tired of not knowing.

That's funny to hear that you get your scans on disc too! I have all mine! I thought I was probably the only one that did that. He he he! Can't tell you that I know much about what I'm seeing, but I have them. LOL One of my u/s techs told me that she hangs out at sonoworld.com You might be interested in checking it out. They get some of their CEU's there.
Good luck!

Keep us updated.
(And thanks for keeping us laughing.)

I don't know where my clots came from either!
I do have a prothrombin gene mutation (Factor II), but scans showed no clots in my legs with either of my PEs...