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Heart Disease (Expert Forum)
recurrent DVT and PE despite anti-coagulantiaQ
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recurrent DVT and PE despite anti-coagulantiaQ
by Mariete, Feb 17, 1998 12:00AM
Posted By CCF Cardio MD - MTR on February 19, 1998 at 22:25:26:
In Reply to: recurrent DVT and PE despite anti-coagulantiaQ posted by Mariette on February 17, 1998 at 18:48:01:
: I really hope some-one reads this message and is interested in my case! I am a 30 year old woman who suffered DVT 8 times during the last 7 years. I am on daily acenocoumarol with high intensity INR settings (around 3.5-4.0 INR). In 1996 I developed SSS for which a DDDR pm was implanted. PM paces at 100% now, versus 3% at the beginning. Conclusion: conduction worsened rapidly (AV-delay was set at high interval to minimize pacing: however: mostly dual chamber pacing, was only atrial pacing before).
They performed various tests to see if there is a reason for the recurrent DVT, only Factor V Leiden sofar, but they gave up testing, since I had to continue taking acenocoumarol anyway (!). I also have TOS left, and it is questionable if the right v. subclavia is OK since my right arm gets thicker and blu-ish when my arm is hanging down. Question 1: how are my chances of developing trouble with the v. subclavia due to the leads? If I get trouble, what is my option? Question 2: what are my chance of developing trouble with the v. cava superior? This issue was the main reason why I was implanted with a VVI first (they replaced it april last year for the DDDR).
Question 3: what could be the reason for this ever recurrent DVT/PE problem? I can hardly go on like this, since the post-trombotic syndrom (syndrome) is already existing in the left leg and not making life easier. What about the relation with cancer? Other reasons? What about a streptococcus infection a couple of years ago? This - as far as I know - can cause heart problems, and blood vessel trouble.
Question 4: could there be a relation between the thrombosis problems and the conduction deterioration? Clots in the veins surrounding the sinus node are ruled out via a catheterization. However: the veins were a bit weirdly construed. Reason?
Question 5: a bit off topic maybe, but have you ever heard of an aneurysm of the vena cava? It shows up on a phlebogram.
One doc suggested something like Marfan before, but what should I do with a "label"?
I really hope someone is interested n this case and is willing to help out. I am prepared to fly all around the world, because I am beginning to wonder what the next "step" will be.
Thanks very much for your reply!
In Reply to: recurrent DVT and PE despite anti-coagulantiaQ posted by Mariette on February 17, 1998 at 18:48:01:
: I really hope some-one reads this message and is interested in my case! I am a 30 year old woman who suffered DVT 8 times during the last 7 years. I am on daily acenocoumarol with high intensity INR settings (around 3.5-4.0 INR). In 1996 I developed SSS for which a DDDR pm was implanted. PM paces at 100% now, versus 3% at the beginning. Conclusion: conduction worsened rapidly (AV-delay was set at high interval to minimize pacing: however: mostly dual chamber pacing, was only atrial pacing before).
They performed various tests to see if there is a reason for the recurrent DVT, only Factor V Leiden sofar, but they gave up testing, since I had to continue taking acenocoumarol anyway (!). I also have TOS left, and it is questionable if the right v. subclavia is OK since my right arm gets thicker and blu-ish when my arm is hanging down. Question 1: how are my chances of developing trouble with the v. subclavia due to the leads? If I get trouble, what is my option? Question 2: what are my chance of developing trouble with the v. cava superior? This issue was the main reason why I was implanted with a VVI first (they replaced it april last year for the DDDR).
Question 3: what could be the reason for this ever recurrent DVT/PE problem? I can hardly go on like this, since the post-trombotic syndrom (syndrome) is already existing in the left leg and not making life easier. What about the relation with cancer? Other reasons? What about a streptococcus infection a couple of years ago? This - as far as I know - can cause heart problems, and blood vessel trouble.
Question 4: could there be a relation between the thrombosis problems and the conduction deterioration? Clots in the veins surrounding the sinus node are ruled out via a catheterization. However: the veins were a bit weirdly construed. Reason?
Question 5: a bit off topic maybe, but have you ever heard of an aneurysm of the vena cava? It shows up on a phlebogram.
One doc suggested something like Marfan before, but what should I do with a "label"?
I really hope someone is interested n this case and is willing to help out. I am prepared to fly all around the world, because I am beginning to wonder what the next "step" will be.
Thanks very much for your reply!
Doctor's Answer
by CCF Cardio MD - MTR, Feb 17, 1998 12:00AM
Dear Mariette, I appreciate the complexity of your problem and yes, I'm
interested and I'll try to help you as much as I can. For starters, a
good review on hypercoagulable states (which you have with recurrent
DVT's) can be found in any medical library in Annals of Internal Medicine
vol. 126, April 1997, pages 638-644. Just ask the librarian for help.
I'll address each of your questions individually.
Question 1: With pacing leads in your right subclavian vein, you are at
higher risk of forming a clot there. However, if your INR on coumadin
remains in the range you claim it stays in, the chance of developing new
clot in that vein is small. I assume they were able to place the leads
without a problem but something could have happened after they were placed.
Your symptoms sound like you may have an obstructive clot there and that
could be diagnosed with an ultrasound or a venogram (an angiogram of
the venous system of the right arm). I would ask your physician about
that.
Question 2: You can develop clots in the superior vena cava which drains
venous blood from the arms and head into the heart. However, the venous
system is able to develop collaterals which are new veins that reroute
blood to the intended destination when a clot obstructs a major vein.
Symptoms that would indicate that your vena cava has a clot in it would
be a swollen head and neck and engorged superficial veins on the shoulders
and neck. Again, a venogram or an ultrasound could diagnose a clot in
the vena cava. I can't say what the risk of a subclavian clot going to
the vena cava is because each situation is different.
Question 3: The cause of your frequent clots could be due to many different
factors. As far as I know, previous streptococcal infections don't cause
clots to form but can be associated with rheumatic fever or kidney failure
which are not related to clotting. Factor V Leiden, as you mention, could
certainly be implicated and is now thought to be the most common cause of
forming clots. Other causes could be disorders in your body's own
anticoagulation system or antibodies that your body can form against
clotting factors in your blood. As far as cancer goes, it can cause
clots to form but that is usually seen in elderly patients and presumably y
your doctors would have already ruled out that diagnosis. I suggest you
start by looking at the article I referenced and having a medical
librarian refer you to a Hematology textbook that will discuss disorders
of the blood coagulation system.
Question 4: I doubt that the venous clots could have caused you to
develop sick sinus syndrome. I did a computerized search of the
medical literature and I could find no association between the two. You
refer to the "veins around your sinus node" in your letter but I suspect
you mean that you had a coronary angiogram which imaged the arteries
supplying blood to the sinus node which were normal. Sick sinus syndrome
is usually caused by degeneration of the heart's conduction system and
replacement of the conduction fibers in the sinus node and elsewhere
with scar tissue. Why you would develop this condition at such a young
age is unclear - this disease is usually seen only in elderly patients.
Question 5: I have never heard of a vena cava aneurysm but I found two
articles you might want to look up about it. #1: Journal of Vascular
Surgery March 1995, vol. 21, pages 505-509 #2: Annals of Thoracic Surgery
Sept. 1990, vol. 50, pages 460-462. It appears to be a very rare
condition and isn't necessarily associated with Marfan's syndrome.
I suggest that you contact our hospital for an evaluation in the
Electrophysiology Clinic for your heart conduction problems and in the
Vascular Medicine clinic for your coagulation problems. Call 1-800-CCF-
CARE and ask for appointment desks for each clinic if you're interested.
If you come here to be evaluated, it would be important to bring complete
copies of your medical records. We would be happy to see you here.
Information provided in the Heart Forum is for general purposes only.
Specific diagnoses and therapies can only be provided by your physician.
Mariette
