Hi there. I had my saddle PE in Feb. It is a very scary thing. But it does get better. I had the filter removed about 6 weeks later. It was a breeze, although I did not know that before hand. They did not know if my lungs were clear or not, but wanted the filter out for the same reason they gave you. The DVT was still hanging around too. I have the FVL gene, but the explanation that the filter itself could cause clotting I decided it was best to remove it. I was very scared, and it sounds like you are going thru the same type of thoughts I did. I know it is scary and if you decide to have it removed, it is truly less than a 5 minute procedure, recovery however consists of laying perfectly still for 5 hrs without moving your head..that was the hardest part of the whole thing for me.

The ONE issue I had after the removal was no one-surgeon or pulmonary Dr. had made arrangements for lovenox after the removal. Your INR is down because you stop taking it before hand and have to use the lovenox. No one accounted for that and I had to address it to my satisfaction. They were sending me home to take an increase of coumadin for 3 days????? Make certain that you have what is comfortable for you as regards a thinning agent after the removal.. This is a decision you have to make, but for me, removal was a definately the thing to do.

I'm so sorry that this is all so scary for you, you've been through a lot already, and I can only imagine the stress of making this decision now.

If you decide to take it out, I have heard from others that it is a very easy procedure, though you may feel a bit tired through the week afterward. If the doctor is ready to take out the filter, then he/she feels that you don't have any more risk from the current clot, so I don't think you should have to worry about PE from this clot.

I have a permanente IVC filter and was never given a choice, when they talked about implanting it, it was only ever presented to me as a permanent fixture. You'll have to think about what you feel most comfortable with doing. Some people are very scared about having them in and worried that tiny clots could form on the filter itself. My doctors have assured me that the risk of that is very, very minimal, especially with the location of my filter at the level of the kidneys where there is constant and multi-directional blood flow. So, I feel much happier and calm having my filter in place, I do not worry nearly as much about future clotting problems. Although I have a permanent filter, I am not on coumadin for life as a result. In fact, the only reason my doctors WILL allow me to be off coumadin is because of the filter, that way if I should clot again, at least it won't get to my lungs. But your situation may be different, for instance if your filter is placed in a different area where for some reason it could cause a different risk.

The way I made all of my decision in treatment was to ask my doctor to lay out the pros and cons for each decision. Then I weighed which situation I was more comfortable with. If you can, have that conversation with your doctor, then talk to your family too and maybe get their input, but remember the decision is ultimately yours, it's your life and your health. Make the decision that you're most comfortable with.

Best wishes,
Sarah

My PE was 2/5 & temp filter placed 2/20 due to clots in my leg. I have been on coumadin since & just had my filter out yesterday. It was scheduled to come out last week but the hospital ran out of retrieval kits. They took it out thru my neck - the procedure took about 2 hours & then recovery room for 2 hrs - I don't remember much but am sore today. Hard to eat or talk. There were no clots in the filter & I am to remain on coumadin for life. Let me know if you have any questions. Debbie from SF.