anticoagulant with cavernoma

[Trish5]

Does anyone here take an anticoagulant for fib while having had a cerebral cavernous / cavernous angioma diagnosis, which is a tiny cluster of blood vessels in the brain.

I normally have episodes of tachycardia so haven't needed an anticoagulant but this weekend I had an episode of fib that lasted about 20 hours and I have been put on Apixaban twice a day for 30 days.

One of the doctors says it is out of the question to take anticoagulants with a cavernoma while a second opinion from a neuro surgeon says it is ok to have a low dosage tablet.

Thanks Trish5

[CDreamer]

Very difficult one - I would ask for a risk assessment on risk of stroke v risk of a bleed. The CHADSVASC would assess your stroke risk whilst HASBLED will assess bleed risk. I would tend to trust the neurologist if he has treated you but remember, it is only an opinion.

Unfortunately there are almost no certainties in life and the two we know to be certain titles are not palatable.

I don’t think I’ve ever seen another post about cavernoma but there are a few members with complicated issues which mean that their risk from taking anticoagulants does make them eligible for other treatments to lessen the risk of stroke.

[Trish5 in reply to CDreamer]

Thanks for the reply CDreamer. I've decided to take the Apixaban after having reread the letter from the neurologist. She clearly states that the anticoagulant should take precedence over the cavernoma because it has been stable for so long and has never shown signs of bleeding. Hopefully I'll be able to see the ER soon.

Best wishes . Trish

[JOY2THEWORLD49]

Hi

You may better to be on the lower dose of PRADAXA x twice day.

Take care, JOY. 74. (NZ)

[Trish5 in reply to JOY2THEWORLD49]

Thanks for the reply Joy, I'm going to take it for a short while I've decided. One of the young cardiologists suggested the pradaxa but he was over ruled by an older doctor.

Trish

[CDreamer in reply to Trish5]

Bleed risk profile on Apixaban is better than Pradaxa.

[Angie06]

Hi Trish, yes I have multiple cerebral cavernomas and also Afib. My neurologist advised my gp and cardiologist not to put me on anticoagulants. My cardiologist then put me forward to have a left atrial appendage occlusion device fitted at St Barts on the NHS which hopefully will prevent clots forming there (although not anywhere else) lowering the risk of stroke. Both my conditions seem to be fairly asymptomatic, only 1/2 AF events a year and occasional headaches. I only ever take paracetamol, never Ibuprofen or any other anti inflammatory medication despite having arthritis but I think the time is coming to rethink as pain from arthritis is on the increase. I've been on this site for a number of years and have spoken often regarding the procedure for Watchman and Amplatzer amulet device if you look at my previous posts. Feel free to message me for any more info. 😀

[Trish5 in reply to Angie06]

Thanks Angie for your reply. You are the first person I have heard of who has cavernomas

I have decided to take the Apixaban till I get an appointment with an ER. (see reply to CDreamer above).I live in France so I think I will have an appointment soon.

My neurologist said that I was lucky to have discovered the cavernoma, it was just by chance when they were looking for something else. I have three of them and when you have more than one it can indicate it could be hereditary I've been told.

I normally have short runs of tachycardia and haven't had Afib for years so was disappointed last week end to go into afib again. I'll come back onto the site after I see the ER to let you know what I've decided to do. I'll have a look at your previous posts as you suggest so I'll know about the Watchman and be able to ask the doctor about it. Meanwhile, all the best and I hope all goes well and you get a date soon.

Thanks again, Trish.

Ps I agree completely with not taking Ibuprofen, I hope you can hold out as long as possible and not have to take it.

[Angie06 in reply to Trish5]

I also have 3 cavernomas and it was the CCM2 hereditary gene as my father also had them and suffered a life changing stroke at only 29yrs. My nephew also has them and suffers from seizures and epilepsy. I definitely would not be keen to take anticoagulants and was very very happy when offered the chance of the Watchman device. You must be guided by your consultants , and wish you well while you decide what's best 😀

[JOY2THEWORLD49 in reply to Angie06]

Hi

Take anti clot through food e.g tumeric, capsican,garlic,ginger etc.

Keep away from acidic foods - tomatoes etc - deadly nightshade products take kumara instead of potatoes.

cheri JOY

[MiniMeGreen]

Extremely difficult question because one contradicts the other. I can only say what I would do which is not to take the anticoagulant and seek a permanent solution allowing for doing so. That is if you have the option to do it this way. I can explain via chat if you wish.

[Trish5 in reply to MiniMeGreen]

Thanks for the reply MiniMeGreen

Please see my replies above about why I have decided to take it for a while. As you say one completely contradicts the other hence my question to the forum. I'll come back once I've seen the ER.

Trish

[JOY2THEWORLD49 in reply to Trish5]

Hi

I've had 3 operations since 2020 Feb.

Easy to stop 3 clear days prior, no problems during surgery and take it 2-3 days after and I am in controlled AF.

cheri JOY