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AVM Survivors Network

Facial AVM and pregnancy


#1

Hi there, I have a general question about facial AVM and pregnancy: all the doctors I met told me it would be very dangerous for me to get pregnant, because of the hormonal peak it would bring with it. Anybody actually got pregnant, or knows anything about that?
Happy day to all:)


#2

hey.
i have a avm in my eyelid which i had embolised in 2012. i fell pregnant in 2014 and had a successful pregnancy and delivered my daughter via c section. i have noticed some regrowth since having my daughter and it was definitely more swollen in the 3rd trimester with increased pain but it did shrink again after deliver. it is worse than it was b4 but not that bad. there are lots of members with facial avms that have had successful pregnancies. where is your avm and have you had any treatments xx


#3

I cannot speak to getting pregnant with an AVM, but my doctor told me the same thing (I had an AVM of the tongue). Please be sure to join our pregnancy group and you can chat with many people there.

http://www.avmsurvivors.org/group/pregnancyandavm


#4

Hey Caro, thank you for your answer! So you did not have any bleeding beside the increased pain in your 3rd semester? Was it big before your pregnancy? My AVM is on the left superior lip, and is spreading on the left cheek. The doctors all seem to say that the pregnancy could bring serious complications. Did the doctors tell you not to get pregnant before you did? I only had some kind of embolization about 15 years ago,but it did not change anything, and then the doctors said it was better not to do anything until it would get really worse.


#5

I have a low flow venous malformation on my tongue, submandible, and right mandible and had a beautiful baby girl in March of 2014 before receiving any Embolization for it. Though out my life it was surgically reduced and a old procedure called cryotherapy (very outdated) was performed on my tongue for the bleeding. I really noticed my tongue bleeding in the third trimester and the growth expanded in my throat making breathing and eating difficult. Since then I’ve have 4 alcohol Embolizations and one surgery to clear out some scar tissue all with success. I’m currently recovering from my forth one as we speak. Do I regret having my kiddo, never! Did they tell me not to do it, you bet they did, but it’s ultimately up to you!


#6

i didn’t have any bleeding luckily but have since having my daughter but that was because i used a blunt eyeliner which must have knocked one of the vessels! it was only a small bleed tho. mine was small compared to what it was before my surgery before i fell pregnant and has only increased in size a small amount. but to be honest I think it would have continued to grow anyway. my doctors did not advise me against pregnancy but warned me they did not know how big it woudld grow and we would have to wait and see. my daughter is worth any increase in size and i hope to have more children b4 i have any further surgery as at the moment my surgeons do not want to do anything for now. everyone is different tho so you just gotta do what’s best for you x


#7

Oh wow, very inspiring, 25beans:) So overall, and thanks to your embolizations, you did not feel it was worse after the pregnancy than before?


#8

Yes, it makes sense. Everybody told me not to get pregnant, and I can tell it is growing no matter what, so I am still debating...But it is very reassuring to see that it might be a possibility! My husband and I were already looking at surrogacy website:/but SO expensive that I started to think about my own pregnancy again haha...Thank you for your answers, gives lots of hope!


#9

best of luck with whatever you decide to do. we also looked into surrogacy at first but like you say its very expensive! we are always here for support if you need us x


#10

I am even better after pregnancy, but that’s related to the embolizations and complete change in how I’ve treated it all my life. I guess you could say my daughter was the force that lead me to a cure…


#11

I see…For sure, giving birth and cherishing this new being you just created must be the best cure you can find…What do you mean by the complete change in how you’ve treated it? Did you have special techniques after the pregnancy? I am just a little hesitant because they tell me mine is a really hard one to treat - my veins are too tiny and mixed up to go through surgery or embolization - but I am trying to see what I can do in everyday life to keep it as stable as possible…anyway, I am so happy for you and your daughter, and I am sure it is so completely worth it:)


#12

Hi Zabbie,
My doctors also told me pregnancy would be dangerous, and vaginal delivery was totally out of the question. Naturally, being somewhat stubborn and wanting what I want, I went ahead with plans to start a family. Sure enough I experienced profound growth and swelling in my AVM during pregnancy, delivered by c-section, and eventually the swelling went away. The AVM remains puffier, larger, darker in color post baby but I have no regrets.


#13

Hey Joyful, your pregnancy sounds scary but with a happy ending:) I love the way you handled it - being stubborn is a useful tool in many situation;)- and I’ll keep your positive story in mind! I saw in your profile that you are talking about hormonal changes and explosive growth, and I can relate to that! I had a tough teenage time too, especially because my AVM is barely treatable - the doctors always say they are worried to make it worse (as it takes the left side of my face from the lip, sensitive spot). I have been taking the birth control pill for about 10years, until doctors from back home told me that it was not good for my AVM - I switched to a non hormonal IUD since February, but I am experiencing some growth since the change…Beside your pregnancy and your teenage time, did you experience something similar? The doctors also told
me it might just be because I am getting older and the tissues of my face are changing. Anyways, cheers to you and your kid:)!


#14

Ah yes Zabbie, the change of life has been somewhat unpleasant. I, too, have been told I have very few options for treatment. In my younger years, pre prego, I had several surgical removals on my right cheek and neck. The cheek always grew back, the neck surgery was more invasive and so far hasn't grown beyond the scar. In my 20's and 30's I had many (several times a year, every year) laser treatments and it was very successful in reducing the discoloration and size of my AVM. It took lots and lots of sessions, and lots and lots of $$ but I was, for the first time in my life, feeling like I looked mostly normal. Funny, I think, that "normal" is such a desirable state of being for me. Anyway, all the great progress we made with the laser treatments was obliterated by the hormonal "soup" I marinated in for the 9 months of my pregnancy. Post baby I experienced quite a bit of growth under my tongue (subsequently removed, 8 days in ICU) and also in my throat. Scary stuff and Dr's do not want to operate on me again. Starting last June with limited options Dr's have put me on an experimental drug treatment using Rapamune (an organ transplant immune suppressor with the curious side-effect of shrinking AVM's) and so far it's working. Plus I get to keep all my organs!
;-)
Now that my AVM is growing again thanks to menopause I believe the Rapamune is the only thing keeping growth in check. It's not without issues though, currently I'm experiencing a lot of swelling. Had a new MRI a couple weeks ago, it's not my heart. Appears the generic version of Rapamune is causing the swelling and I hope to be looking a lot less like Quasimodo in the coming weeks.
Anyway, I figure with or without pregnancy I was bound to experience the discomfort, swelling, and growth of my AVM with the onset of menopause, so I might as well have the baby I so desperately wanted. Sort of a "damned if you do..." scenario, but I get to be a mom to a most amazing child and it has been the best decision I've ever made. LIFE! What an adventure!
Cheers to you Zabbie!


#15

Haha, it definitely is!!! If I can ask, why did the doctors tell you that you had very few options for treatment? Is your AVM low or high flow? Interesting, the laser treatment - what is that about?? (Sorry, my curiosity is endless, stop giving me food if you want me to stop asking ha;)
Anyway, loads of treatments, that seemed to be pretty efficient overall, right? And I guess the “soup” was the most worth it:)
I only had 2 ridiculous embolizations when I was a teenager, they did not do much and then they said we don’t want to do anything else and make it worse - pretty stable over my 20ies, and now that the beast woke up again, I had no choice but to get curious about it and get some information, so far same answer, it’s a tough one, nobody wants to touch it. Believe it or not, until last December I did not know it was called an AVM! This is how much I cared in my 20ies - even if it has always been in the middle of my face!
So obviously, your adventure is fascinating…As well the drug you are taking - the shrinking one, is that the best you had so far? I am so sorry the menopause is another explosive step of life - on the other hand, isn’t it “supposed” to shrink afterwards?(I know, as if AVMs were doing what they are supposed to do) let me know how it goes with the medicine - are you gonna get rid of the generics? Go, life!


#16

I have a complicated and cavernous AVM with high flow, large "leg" veins along with smaller ones. The laser treatment collapsed the smaller veins which happened to be closer to the surface of my skin, so that want a long way towards reducing its size and appearance. My last laser treatment was over 10 years ago so I'm positive technology has improved lots since then. It's definitely worth looking into. I've also had a few sclerotherapy treatments that did absolutely nothing for me. My last MRI showed several "feeder veins" that could be embolized. I'm excited to pursue that option.
You know what, I didn't know mine was an AVM until a few years ago. I had always called it a hemangioma.
This Rapamune drug therapy is new for me. Always before it was invasive surgery, sclerotherapy, or laser treatment.
What were the embolizations like for you? What did they use? I'm reading a lot about this Onyx (glue?!) and it seems awfully painful. Is it an overnight thing, or a day-surgery thing? Office treatment? That would be pretty cool. Each time I had the sclerotherapy it was an overnight hospital stay, completely uneventful. I suppose it's good the Drs are cautious, but...
Well anyway, hope you're enjoying your weekend.
Cheers!


#17

Oh, so would you say that laser treatment is pretty outdated today? Is it something you would still do or you would rather focus on more modern techniques?
I also called mine an angioma until 6 month ago! How did you find out about yours?
I don’t remember much of my embolizations…My current doctor who saw all the files told me they used something similar to “snow”, that falls on my veins (?sorry I don’t have a better explanation in English, it would be easier to explain it in my mother tongue;) anyway, he said it does not do anything or it is a VERY temporary technique - just for a month or so…I donmt know much about today’s techniques, which is why I am asking you…I heard about Onyx, my doctor said they could not use that on me since my veins are so small and “messy” - did your doctors tell you anything about that? I believe it is a day surgery event?
So what are you plans for the coming months, keep on taking the same medicine and see how you will react?
Hope you’ll enjoy the coming weekend;)


#19

Yes, you have a good point Bek. Everybody seems to say that the last months of the pregnancy are pretty critical…I would not decide anything until I’ll have more medical advice…Happy for you that everything turned out pretty well:)


#20

Hi, saw your post, I’m new to the forum, AVFs, and Onyx. Only 4 days post op from Onyx embolization so I can’t speak long term, but the recovery hasn’t been too bad. One night overnight in hospital and head felt pretty swollen and tired, a little crappy (but still ok) the day of and day after. (I think all three were scalp and face AVFs) It was done entirely endovascularly, microcatheter femoral artery via groin, using scans & contrast (iodine, and I think floroscopy) took about 5 hours under general anesthesia for the whole process. I’d do it again if I have to (but I hope i dont have to!!!) Unsure of what to expect regarding longterm affects. Also the onyx has a very specific, unique smell to it (on the breath after procedure) but it goes away in 2-3 days. Best of luck to you


#21