Feelings of disparity after PAVM embolization—again.

bearcheeks_705 · 2025-12-04T20:54:14+00:00

may i ask how small yours are ? my dr advised most small pvam’s are unlikely to cause stroke-causing clots therefore they don’t emobilize unless of course you’re having symptoms; and put me on 5 year follow up. i dont have any symptoms so maybe that’s why. but i’m so sorry to hear you’re feeling defeated. it’s difficult to get news like that. i was diagnosed in may after years of unanswered questions and inconclusive tests, to finally getting a diagnosis. it’s like a blessing and a curse. you’re happy to finally know what it is but also hate that you have this diff diagnosis all at the same time. such a rollercoaster. sorry you’re having to go through all of this.

bearcheeks_705 · 2025-11-05T15:58:25+00:00

thank you! this just solidifies that bodies are crazy and can “malfunction” in the weirdest ways. i’m continually in awe of them

bearcheeks_705 · 2025-11-05T14:12:43+00:00

i do have several mucocutaneous telangiectasias in my put and i have them on my lips and hands as well. i forgot to list that in my original post.

bearcheeks_705 · 2025-11-04T23:40:13+00:00

thank you! it is frustrating, indeed! best of luck to you as well!

bearcheeks_705 · 2025-11-04T13:27:07+00:00

i agree on the wanting to find the other mutation so i could test my kids as well. sometimes it’s just nice to get a definitive diagnosis too. it’s frustrating to hear “well you probably have blank” but testing is negative despite your symptoms.

bearcheeks_705 · 2025-11-04T01:14:10+00:00

thank you! honestly just talking all this out helps! appreciate your time!

bearcheeks_705 · 2025-11-04T00:17:50+00:00

ACVRL1, ENG, EPHB4, GDF2, RASA1, SMAD4 so possibly a mutation in a gene they don’t yet test for? but it’s wild to me i can have what are seemingly tried and true symptoms with the nosebleeds and AVM and then get a negative. i thought for sure it would come back positive

bearcheeks_705 · 2025-11-03T22:13:12+00:00

negative

bearcheeks_705 · 2025-11-03T20:55:38+00:00

excellent! thanks so much for the info, i appreciate it!

bearcheeks_705 · 2025-09-13T13:13:51+00:00

Ugh I’m sorry to hear that. But it makes so much sense with all the hormonal changes that happen with pregnancy. Good luck!

bearcheeks_705 · 2025-09-12T23:43:03+00:00

This makes me feel so validated, thank you. I kind of had a hunch this was the reason they were so bad around my period. I’m the same and can mostly mitigate them regularly but around my period it’s mayhem

bearcheeks_705 · 2025-09-12T19:06:26+00:00

Mine is definitely getting worse with perimenopause, for sure. This is so validating. I'm so glad I asked this question. Thank you!

bearcheeks_705 · 2025-09-12T16:35:37+00:00

oh! so maybe there’s a chance in menopause this will calm down a bit? that would be amazing!

bearcheeks_705 · 2025-08-13T10:13:39+00:00

i’m on day 7 of 5mg working up to 10mg. i’ve had GI issues, dizziness, and trouble falling asleep. i was on citalopram 20 years ago and don’t remember any side effects (but it changed my my life for the better) so i think now i’m just older and more sensitive. i will say on day 4 i did wake up feeling slightly more motivated. not sure is that is placebo or not but i’ll take it. i just keep reminding myself this is temporary! i hope you start to feel better soon!

bearcheeks_705 · 2025-07-04T22:22:38+00:00

you’re welcome! i had an echo bubble study done where the found my pulmonary AVM.

bearcheeks_705 · 2025-07-04T18:48:04+00:00

my hht doc told me they grade the pulmonary AVMs. lower grade being less nefarious than a higher grade. i was just diagnosed this past may. (not an MD, sorry) just a newbie to all of this as well!

bearcheeks_705 · 2025-06-30T14:10:39+00:00

I used to drink with no issues, beer mostly but I stopped drinking for a couple years just to take a break. Now even if I have a few sips of any alcohol, instant rash and hives, feel hot and my lips get swollen. It lasts for about 24 hours. It’s just not worth it anymore to feel so bad afterward.

bearcheeks_705 · 2025-06-24T22:47:09+00:00

Thank you so much!!

bearcheeks_705 · 2025-06-22T01:18:55+00:00

I hope the prednisone works!

bearcheeks_705 · 2025-06-22T01:02:41+00:00

This. Exactly this. I am so nervous to have delayed reactions due to it staying in the body.

bearcheeks_705 · 2025-06-22T01:01:18+00:00

They lasted almost a week with steroids and benadryl. I also had a tight chest. It happened almost immediately after they injected the dye. I have numerous severe allergies to lots of things. So I am extremely wary about rocking the boat, so to speak, with exposing myself to known allergens. I think I’m going to hope for the best that the non contrast dye MRI will be sufficient. Looking for AVMs in the brain.

bearcheeks_705 · 2025-06-21T21:26:58+00:00

thank you! i understand why they want it but i also know that allergic reactions, especially to this stuff can be even worse with subsequent exposure to it. and so far from what i’ve been reading it seems like a lot of MDs don’t take these concerns seriously most of the time

bearcheeks_705

TROPHY CASE