Hi, hate to suggest it but a venogram (ouch) was the only way of being totally sure of exactly what is what in the pelvis, so they told me!
If they're just looking for normal or improved return though, surely an ultrasound would give them a fair idea? This is what they're going to do for me next September, to see if anything's recanalized.

Hi Deerua,
I am also at the 6 month mark, yesterday I saw the cardiologist, and even if my clot was not so extensive as yours, he said that it is better for me to stay on warfarin 6 more months.
To be honest, I'm relieved because I don't want to deal right now with the possibility of having another DVT when I will be off the anticoagulants.
And also, after one year, there is a greater chance of a clear ultrasound.

My point, maybe you can have another CT at one year from the first one.

My vascular doctor automatically ordered a CT scan. He does ultrasound in his office, so I am assuming he would have done that if it would help. Ultrasound might not show if it isn't completely gone, as they only measure the sound waves of the blood moving through your body. Just wondering where is your clot? Mine is in the ovarian vein and can't find anyone on here with one of those!

I've always had my DVTs found using ultrasound, but none of mine have gone all the way up into the pelvic area.

Maybe you could start with the ultrasound? If it finds clotting in the legs, maybe you could avoid radiation to look at the pelvis because you know there are still clots present?

I dunno ...

Thanks so much for all your replies. They're very helpful. I will wait until December when I go back to my haematologist and discuss what option he thinks best. Hopefully if the results of the D Dimer are not elevated, then I may not need further scans. Are the D Dimer tests reliable enough by themselves?

NaejAral, sorry to hear about your ovarian clot. I haven't heard of that before, mine is in the iliac and femoral veins. I hope you are recovering well.

Thanks again :) D

If the D-dimer test is under 250 when you are on warfarin and has a normal value(less than 500) at 3 - 4 weeks after you are off warfarin plus a clear U/S(no residual clot), means that most probably you will not have another DVT, but this only valid if you tested negative for other blood coagulation disorders.
Some of these tests can be done while you are on anticoagulants, others only after you finish your treatment.
I hope this helps.

Thanks Manu, that helps a lot!
I've had some of the tests done while on warfarin but they said the ones that didn't interact with the warfarin came back negative :) but that they won't give me the final results of the other tests until they check them again when I'm off warfarin. FIngers crossed!! :)
Thanks again, D

Hi again,
Thanks again for all your replies.
I got a letter in the post today asking me to come in for a US venogram of Left Lower Limb tomorrow.

When I last saw the haematologist he said he would do 2 D-dimer tests, one one month after the other, and if they came back negative I could come off the warfarin, but if they were positive he would consider whether to do scan/ultrasound/venography. I am not due back to get the results of the first d-dimer test until the end of december, but I got this letter in the post to go in tomorrow for the venogram. I don't know for certain but I assume this means that the D-dimer was positive.

Have any of you had venograms and if so did were there any side effects afterwards? (I've heard that they're painful, but I just want to know if I will be ok for work afterwards, etc...)
Thanks

I just wanted to recommend not assuming anything. I would call to get the d dimer results so you know and understand. Even on my routine exams, like pap exams and mammogram, if I don't get a letter or a call telling me the results, even if I assume they're normal, I still call my doc. You never know if there's a mix up, if something got overlooked, etc.

Thanks rmb. You're right, I'll ask them about it tomorrow when I go for the venogram, as they should have the results :)

Just an update:
I went for the 'US venogram' today...which is not at all what I thought it was! I was expecting a venogram that inserts a catheter into the foot and injects iodine to see the veins...but a US venogram is a simple ultrasound, so no pain involved :)
The radiologist talked me through it. She said that the vein above my knee was very narrow, but that there was bloodflow, so I'm really happy about that. When she got up to my upper thigh and groin area she said she could see 'blockages', but that it was hard to tell from an ultrasound if that is old clot/scar tissue or what. She said that an ultrasound is good for the legs but not for the groin area, and that I would need to get further testing (venogram or CT scan) to confirm this, but that's the haematologist's decision.
I will have my appointment with my haematologist in late December, so I can discuss all the results with him then (still don't know the d-dimer results) and see where to go from there, but I think it sounds good. I am so happy to have a small idea of what's going on in my veins!!
Happy thanksgiving all :)

Dee,

Terrific to have positive progress.
Glad the US venogram was painless.