DVT, PE and Aneurysms

I would like to know if anyone who has had a SAH (subarachnoid hemorrhage) with remaining aneurysms coiled also been diagnosed with deep vain thrombosis (blood clot in leg) and pulmonary embolism (blood clot in lung). I am asking because I was just recently released from the hospital for a DVT and multiple blood clots in my lungs. Because of this I am now on warfarin blood thinners. I understand the critical nature of having all of this. However, what I am hoping to find out is the prognosis of having all three. Since I have to be treated long-term with blood thinners, how risky is all this going to be with me having the coiled aneurysms. The aneurysms were coiled in January 2013, so I am still in the follow-up phase.

Any information is appreciated.

Thank you

Hi there, while I did not had a rupture, I did have an aneurysm coiled and am on lifetime warfarin. I worried about it a lot, but now I don’t. The biggest risk would have been a rupture while on Warfarin, as chance of survival would have been very small. But treated aneurysms and being on Warfarin coexist just fine.
Hope that helps!

I wonder if they are all somehow related-I had the SAH, first coiled, then clipped and another pre-anuerysm carotid artery bled during surgery that was stitched. A small 3rd anuerysm on my brain stem has not grown and is being monitored. No blood clots. I am on no medication other than vitamins, minerals, herbs, and ibuprofen. My little sister had DVT that turned into PE when they tried to surgerically remove the DVT, and she is on warfarin. My older sister has a immunoglobin disease- CVID- common variable immune deficiency, and is getting regular immunoglobin injections. Neither of them have been tested for anuerysms, even tho it runs in our family, they are afraid and dealing with their diseases. I think they are all related somehow.
I hope you are being monitored, checking your blood pressure regularly, and have doctors & medical care you trust. Healing thoughts your way!

Hi, thanks for the response and your information helps. While I am not only wondering about being on Warafin for life, but I was also hoping to hear from someone who has actually had both DVTs, Pulmonary Embolisms and a ruptured aneurysm. I have all the above. The ruptured aneurysm occurred 12/31/12 but they found 3 unruptured aneurysms also that are coiled. My doctor said it was extremely uncommon (his words) for a person to have all 3.

Thanks again!!

Karene said:

Hi there, while I did not had a rupture, I did have an aneurysm coiled and am on lifetime warfarin. I worried about it a lot, but now I don't. The biggest risk would have been a rupture while on Warfarin, as chance of survival would have been very small. But treated aneurysms and being on Warfarin coexist just fine.
Hope that helps!

Hi - after my aneurysm and SAH surgery, I developed a pulmonary embolism in my lung. I was told that PEs often form after surgery, particularly after brain surgery. At first I was put on Warfarin but then when we found out I needed another clipping surgery (first one wasn’t done correctly), my new team at NYU said I should absolutely NOT be on thinners. Because if you’re on thinners and have another bleed it would be a disaster. So instead they placed an “IV Filter” which is a little filter that catches any potential blood clots and prevents them from harming you. Maybe you can ask if that’s an option for you? My filter was temporary and now it’s out.

Yes, Karri. I am being monitored. I believe my fear and uncertainty comes from the reaction by the doctors to my problem. Everyone seemed a bit hesitant to make the call to put me on blood thinner. I guess the good part is that all the doctors are now working together on my treatment (hematologist, cardiologist, pulmonologist and my primary care). They put the IVC filter in to help stop the clots from going to my lungs again or my heart.

Thanks again for taking time to respond!! I wish you and your sisters the best!!



Karri said:

I wonder if they are all somehow related-I had the SAH, first coiled, then clipped and another pre-anuerysm carotid artery bled during surgery that was stitched. A small 3rd anuerysm on my brain stem has not grown and is being monitored. No blood clots. I am on no medication other than vitamins, minerals, herbs, and ibuprofen. My little sister had DVT that turned into PE when they tried to surgerically remove the DVT, and she is on warfarin. My older sister has a immunoglobin disease- CVID- common variable immune deficiency, and is getting regular immunoglobin injections. Neither of them have been tested for anuerysms, even tho it runs in our family, they are afraid and dealing with their diseases. I think they are all related somehow.
I hope you are being monitored, checking your blood pressure regularly, and have doctors & medical care you trust. Healing thoughts your way!

Hi Jennifer,

Your response is close to what I was looking to find out. I had the SAH and coiling done New Year's eve 2013. (My daughter is a nurse and made the decision for the coiling instead of the clipping). They also found 3 other aneurysms which 2 were coiled but the other was small and did not require anything. The DVT I just had was the 4th DVT. I probably got it because I work in the field and drive extensively. They put the IVC filter in after this last DVT when they found the P.E.s and the hematologist told me I would be on blood thinners for life. My concern is the reaction by the doctors, who seemed hesitant to put me on thinners because of the aneurysms. When they did, I was told I needed to be monitored and not be by myself. Because of this, I have had to go out on disability and will be moving to GA to live with my daughter because I live in NJ by myself and there is no family here at all. Even though I have lots of friends, they are not family and have no authority to make a decision about my medical care. Needless to say, I am very concerned and a bit scared about what's next.

I posted the question because I asked both my hematologist and cardiologist about the % of people with DVTs, P.E.s and aneurysms and was told by both doctors that it is very uncommon.

Thanks for your response!!


Jennifer said:

Hi - after my aneurysm and SAH surgery, I developed a pulmonary embolism in my lung. I was told that PEs often form after surgery, particularly after brain surgery. At first I was put on Warfarin but then when we found out I needed another clipping surgery (first one wasn't done correctly), my new team at NYU said I should absolutely NOT be on thinners. Because if you're on thinners and have another bleed it would be a disaster. So instead they placed an "IV Filter" which is a little filter that catches any potentiL blood clots and prevents them from harming you. Maybe you can ask if that's an option for you? My filter was temporary and now it's out.

It’s good you’ll be near your daughter. Long drives aren’t good for us anymore :). Before you leave NJ and move to Georgia, maybe you should swing by Columbia Presbyterian (Dr. Philip Meyers) or NYU (Dr. Howard Riina who re-did my surgery and saved my life), just to get their opinion on your small untreated aneurysm. Because that would be the main concern for being on thinners. “Size” is not always what makes an aneurysm likely to rupture…location and other factors count, too. I learned the hard way that not all neurosurgeons are extremely knowledgeable.

yes i had dvt 10 yrs ago, sah 6 yrs ago and cant help to wonder if warfarin caused sah?? Ask your dr about the new thinner xeralto - its a Godsend for me since it requires no monthly pt/inr testing. My veins are not good for lab draws, tc

Hi- I developed a DVT in my leg whilst in a coma after SAH (clipped), a filter was placed in my abdomen to catch any clots that might escape (still there)- I was on Warfarin for 6 month (I had to ask to be taken off- and pass a variety of tests)

I've had 4 brain aneurysms, 3 have ruptured but never had a DVT or blood clot in my lungs. I try and move around as much as I can and on a plane I stretch and walk as much as possible so the blood doesn't pool in my legs. Hope the Warfarin helps.

I would start with your neurosurgeon as far as anyone prescribing blood thinners.

I had an SAH and had coiling done in Sept '14. Fortunately after my first follow up scan, I was told there were no otheir aneurysms. I have read up on reasons why aneurysms rupture and saw that stress could be a factor which could certainly have played a part in mine. I have always worried about other complications but just got word that I won’t be scanned again for 18 months which seems a long time. Is this normal? A neurosurgeon mentioned coil compaction but what kind of timescale does that occur in?

They would not allow me to take Xarelto because there is no way to stop a bleed while on Xarelto. The hematologist said I could only take Warafin because they can stop the bleed if I should start bleeding. It's scary living like this though!!

Thanks for your reply.



ronk said:

yes i had dvt 10 yrs ago, sah 6 yrs ago and cant help to wonder if warfarin caused sah?? Ask your dr about the new thinner xeralto - its a Godsend for me since it requires no monthly pt/inr testing. My veins are not good for lab draws, tc

Thanks Jennifer. The untreated aneurysm has been checked twice by 2 different doctors already. It is supposedly located near a bone at the base. Yes I am actually looking forward to going to live with my daughter. I have had enough of living in this neck of the woods as I am originally from Ohio and moved here a few years ago because I got laid off and secured a job in NYC. I will definitely not missing the driving hours here to just go 10 or 15 miles. It's disgusting!!!

Thanks for your comment!!



Jennifer said:

It's good you'll be near your daughter. Long drives aren't good for us anymore :). Before you leave NJ and move to Georgia, maybe you should swing by Columbia Presbyterian (Dr. Philip Meyers) or NYU (Dr. Howard Riina who re-did my surgery and saved my life), just to get their opinion on your small untreated aneurysm. Because that would be the main concern for being on thinners. "Size" is not always what makes an aneurysm likely to rupture...location and other factors count, too. I learned the hard way that not all neurosurgeons are extremely knowledgeable.

Hi unfortunately, I do not know. I have gone back every year since my original coil for them to be checked. I missed this year because of the DVT.

TMG1297 said:

I had an SAH and had coiling done in Sept '14. Fortunately after my first follow up scan, I was told there were no otheir aneurysms. I have read up on reasons why aneurysms rupture and saw that stress could be a factor which could certainly have played a part in mine. I have always worried about other complications but just got word that I won't be scanned again for 18 months which seems a long time. Is this normal? A neurosurgeon mentioned coil compaction but what kind of timescale does that occur in?

No they are not related. I asked when I developed the latest DVT. My hematologist said there is no connection between DVTs and aneurysms.

ronk said:

yes i had dvt 10 yrs ago, sah 6 yrs ago and cant help to wonder if warfarin caused sah?? Ask your dr about the new thinner xeralto - its a Godsend for me since it requires no monthly pt/inr testing. My veins are not good for lab draws, tc

I was first diagnosed with massive bilateral PEs and DVT in February 2008. Then in June 2008, my unruptured aneurysm was diagnosed. At that time I had been on first Arixtra and then warfarin. Once the aneurysm was diagnosed, I was immediately taken off warfarin and had an IVC (inferior vena cava) filter placed to catch clots. The clots continued and after several hospitalizations for heparin therapy, finally I was put on Lovenox in October of 2008 and had my aneurysm treated with coils and occlusion in January 2009. I have been on Lovenox since. During the period I was off warafin, my blood was able to be tested and it was discovered I have a anticoagulation disorder called 4G/5G polymorphism. I agreed with the decision to stop the warafin because the the problem with warafin is that the medication continues anticoagulation for days after you stop taking it. You would need emergency medications to counteract the effects should the aneurysm bleed. Lovenox has a 12 hour life. I have had many, many cerebral angiograms post aneurysm repair as well as surgeries. I stop the Lovenox 24 hours before the procedures and go back on the evening post procedure. I would have had to been off warafin for may days and then stepped down to Lovenox or Arixtra pre procedure. Lovenox is expensive, but covered with insurance. I also don't need to test my INR or have any dietary restrictions. However, you must be followed by a hematologist to titrate the proper amount of Lovenox and then get tested every 3-4 months for blood testing. Personally, I will never take warafin again. I also have wondered if there was any connection between the underlying cause of my DVTs/PEs, which is a blood clotting disorder and my aneurysm. I hope you continue to be in health.

Ok, great. Best of luck with the move and keep getting yourself checked. :slight_smile:


The_Hammer said:

Thanks Jennifer. The untreated aneurysm has been checked twice by 2 different doctors already. It is supposedly located near a bone at the base. Yes I am actually looking forward to going to live with my daughter. I have had enough of living in this neck of the woods as I am originally from Ohio and moved here a few years ago because I got laid off and secured a job in NYC. I will definitely not missing the driving hours here to just go 10 or 15 miles. It's disgusting!!!

Thanks for your comment!!



Jennifer said:

It's good you'll be near your daughter. Long drives aren't good for us anymore :). Before you leave NJ and move to Georgia, maybe you should swing by Columbia Presbyterian (Dr. Philip Meyers) or NYU (Dr. Howard Riina who re-did my surgery and saved my life), just to get their opinion on your small untreated aneurysm. Because that would be the main concern for being on thinners. "Size" is not always what makes an aneurysm likely to rupture...location and other factors count, too. I learned the hard way that not all neurosurgeons are extremely knowledgeable.

HI to the Hammer... my curiosity is up...as to when your DVT and pulmonary diagnosed?

What did your initial blood tests display when going in for initial rupture/treatment? And, then, the post-treatment blood tests to the continuing?

Forgive me if you have already answered questions like this...I cannot always read/remember other answers...

Hello!

I am a 51 year-old male who also has had a SAH and am on blood thinners. I, on the other hand, had a filter implanted in my abdomen to "catch" the clots. Mine were, and still remain in the legs.

Please have confidence in the blood thinners. They do work. My aneurysm was in 2010 and have had no relapses, nor other complications. I have, however, experienced considerable swelling in the legs, but I remain hopeful that with proper diet and exercise, that will return to "normal"

God Bless and Good luck.

Zipperhead (Another Long Story)