Pulmonary embolism

I had my avm removed on 11/30 and was feeling so great and so relieved that I was on the other side. On Tuesday I started getting chest pain and was thinking I was getting sick because I felt short of breath. My family convinced me to go to the er just in case I had a blood clot in my lungs and of course I did. Usually they get you started ramped up on blood thinners but with my recent brain surgery they were worried on starting blood thinners too fast. I had to stay in the hospital a couple days while they slowly increases the thinness of my blood. Once it reaches therapeutic levels I got a brain ct to see if it was bleeding or looking sus. Luckily it wasn’t and I was able to switch to an oral blood thinner and go home. I’m really struggling in pain from the clot and under a lot of stress because once again I feel like my brain is just going to start bleeding randomly. I only had like 2 weeks after my avm was removed where I wasn’t worried I was just going to start hemorrhaging but now that’s all I worry about. I’m really just tired of not being able to do things I normally do and in constant pain. It feels like it will never be over. Once I cross something off the issue list a new issue replaces it. It’s been a very long year and the stress is truly taking it’s toll. I know I’m luckier than a lot of people and most likely the pain and blood thinners are temporary but I don’t know how many more hits I can take. If whoever is reading this has experience with PEs or living on blood thinners I’d love to hear your experiences - the good, the bad and the ugly!

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I remember when I had my embolization, “they” told me to stay off blood thinners & the like.

So, actually have - till now, it’s been over two & a half years since my embolization & all the sudden I start getting these all over head aches about a week ago.
I tried Tylenol, but it didn’t work too well - then, I tried an ibuprofen(which I’m not supposed to due to its blood thinning properties), it worked a bit better.

But, I’m way farther out post embolization - but, mine was embolized only & not removed.

I dunno, some days “you damned if you do & still damned if you don’t”

Hope you feel better

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I had an AVM resection in July and developed a clot in rehab due to immobilization and two more at home. I’ve been on blood thinners now 6 months with no issues. Of course with 7 aneurysms, it is no small deal! I’m hoping for surgery for the largest aneurysm and could go on more thinners of a different kind.2/3 of my clots are gone but one little stinker remains so I’m on maintenance thinners for that one. My post surgery issues were steady ( multiple uti’s too) and I didn’t think they would ever end but finally I am slowly progressing but don’t know if I’ll ever get scare-free. i think regardless, I will live my life to the best of my ability with a cloud hovering above me just to remind me of just how precious each day is. This life takes some getting used to that is for sure but I hold out for the best I can get and control only what I can! I wish you the best as I know exactly how hard this is. Hang in there for the best you can be and work only on the parts that you can control and let go of what you can’t. I think that could land you some relief from the emotional toll of this situation.

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Jessica,

So I want to encourage you that I don’t think blood thinners will cause you to bleed. I’m pretty sure you can put that worry out of your mind. The reason we are told to avoid blood thinners is because if our AVM decides to leak, it will leak longer and be more difficult to to stop. So it’s a thing to avoid generally but when you need to sort out a PE, it’s just something you need to do. I don’t think there’s an increased risk of likelihood of a bleed, just an increased risk of impact if it does.

Make sense?

Hope it helps.

Richard

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You don’t. But if you have a clot that forms for some other reason, such as a pulmonary embolism, you’ll need thinners to dissolve the clot safely. And the point of this thread is that we are often told as AVM patients to avoid thinners which is why @Jessica12 is concerned.

So one doesn’t follow directly from the other but it is still a very relevant worry.

Hope this helps,

Richard

Thank you all for your kind replies! I’m sorry it’s taking me so long to reply. Overall I’m doing better and the pain in my chest is less. I see a hematologist today to see how long I’ll need to be on blood thinners. I’m really anxious about it. I seem to be pretty anxious about doctors in general since my AVM diagnosis - I’m sure this is a trait many of us are dealing with! I guess right now my biggest fear is that clots are still forming and one will go to my heart or my brain. My second biggest fear is that since I still have pain more of my lung is dying. Not to sound like a whiny child but I really just want to put this chapter behind me and stop worrying about random pains in my head and chest and just live my life and be fully present with my son.

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@Jessica12 I am so sorry blood clots are not a joke! I had 5 of them in my brain before I got my AVM / DAVF. I had a rare stroke from them called a CVST. I was in a coma and then paralyzed. I had a long painful recovery.
I still have constant head and body pain from the stroke.

I was on blood thinners. Then I guess it’s common that the CVST can cause a DAVF so then they took me off the blood thinners.

They tested my blood to see if I had a genetic trait to clot and I knew I had the opposite. I have something called Ehlers Danlos and many of us have Von Willebrand .

They said mine was probably from eating too much vitamin k and taking vitamin k. I had also quit drinking and was working out. I was a Fixed Income Trader and going out after work for drinks with other dealers is just part of the job.

Anyway at first they also said no hormones but the blood thinners were causing my period to be constant so then I got put on natural compounding progesterone this was before the DAVF.

This was 12 years ago and I have never gotten another blood clot. I have either 2 beers a week or 2 glasses of wine a week or I cook with a bit of turmeric with pepper.

I stay away from Vitamin K I maybe have it once or twice a week.

My Stanford neurologists and Cardiologis told me not to have the vaccines for Covid because of that my blood clots in the past and given that Covid is 99.97 Survivable as long as you don’t have any of the other things like COPD, diabetes not High risk .

Since my stuff happened in reverse I was really scared to be taken off blood thinners and worried that my clots would never go away. I was also taking coconut oil daily to detox the meds like Gabapentin I taken for my body pain. They thought it would take 3 years for me to walk etc again and for my brain damage etc to get better that was even before the DAVF. It took about 16-18months fully.

Now my scans show no signs of the two strokes I had ( had another one during my 1st embolism)
And my Stanford Stroke dr who is the head of stroke can’t explain why.

Did they test you yet to see if you have any of the clotting traits? If I remember correctly you off to be off your blood thinners for a bit to test.
It’s totally normal to worry . I think we all have been through so much and it’s hard to have all this rare medical stuff happen to us especially when people can’t physically see it and we look fine!

Please if you need to chat I know how painful it is have them clots reach out to me.
Let us know how the hematologist appointment went.
Hugs
Angela