Cavernomas and coumadin

[cuoricino]

Anyone else have cavernomas in their brain? Am I the only lucky one in this club?

So about 3 months ago I started having issues with my vision - similar to a migraine aura but it never went away. Sparkly blind spots were persistent morning noon and night and would pop up randomly in just about every corner of my vision until it settled around the lower left area of my left eye - wiping out my peripheral vision in that area.

2 visits to the eye doctor, 2 visits to 2 different neurologists, an MRI, and a consult with a neurosurgeon later.... turns out I have a couple of very small cavernomas. And one happens to be located in the primary vision cortex of my brain. This is almost certainly causing this persistent aura-like effect. Neat.

I'm also a coumadin newbie following my February 2020 surgery. You may remember me from a different thread where I couldn't get my INR under contol. Excellent.

My INR is much better managed now, but I'm starting to come to terms with the fact that my vision may be permanently impaired AND it will be even more important than ever to keep my INR in the sweet spot that will ensure I can prevent clots, while at the same time preventing added risk of excessive bleeding of the cavernoma. Like, instead of shooting for 2.5-3.5 range, I'll have to find a sweet spot in between 2.5-3.0

Anyone else on coumadin/warfarin who has a cavernoma? Care to share your experience?

 

[tom in MO]

My sympathies. I am sure that's a disappointment after having a good operation and getting your INR under control. Good luck. Remember your valve replacement is still a success because you are still with us.

Sorry I have no experience with a cavernoma. However, like you I have a mechanical aortic valve. I was told to shoot for an INR of 2-3, but they lowered it to 2-2.5. With the St. Jude and Onyx valves they have lowered the range over the years. Not all doctors know about the new ranges and some national health systems consciously stick with the original ranges. You may want to ask whomever manages your anticoagulation if your valve would allow for a lower range than 2.5 to 3.0.

 

[Eva]

Sorry you have to deal with cavernoma and hope you achieve good results.
When I skipped testing my INR for two weeks, I had a TIA in my left eye. Suddenly, I saw like a grey curtain dropping down and I wasn’t able to see anything. I checked my INR then. It was 1.8!!
Rushed to my ophthalmologist. Luckily, I was fine later. It was scary!