Hi every one, I am new to the group. I feel really lucky that I found this plattform, and learnt a lot from you. I am from Vietnam and living in Germany. I accidently informed about my brain AVM in January 2019, after a total health check up with MRI scan in Vietnam. My AVM was 2,5x2,7 cm (after one year it is getting bigger but I am not sure about new measure), in the right post central parietal. There was no symtoms at all, well I do have migrane once or twice per year that it is. I am now turning 30, quite low blood presure, no bleed no seizure, and with this frequence of migrane I guess it was pretty lucky that I know about my brain problem. The neorologist in Hamburg told me that my AVM is too central and should not be treated, I will have to do an angiogram test soon to check if there is any problem with connecting vessels and so on.
I am now in the same problem with other unruptured AVM people, treat or not treat. I will choose to trust my neorologist. The ideas of waiting for it to rupture or treat with high risk both really scary. Plus I am planning to have my first baby in few years, which turns out also dangerous as the bleeding risk for pregnant women even higher.
I will also discuss this to my neorologist, if dealing with AVM first and then having baby a better option, because then it will be safer that it will not bleed in the future. Probably my options will be embolization or gamma knife, will take like 3 years.
Is any one here, or anyone you know has unruptured AVM and had no problem with pregnancy?
I’m curious to read about other people’s experiences. I have a 12 year old daughter and worry about when she starts mensturating, and much further down the line when she gets married and wants to have children.
Hi there. Really sorry but I have only just seen your post. I really sympathise with your situation and choices because it was the same for me. I have a Cerebellar AVM which I found out about in my mid-twenties. At 28 I got married and was desperate to have a baby. I hadn’t ever been told of any risks associated with pregnancy and AVMs. and like your AVM mine is in an awkward place. Any teatment carries a high risk for me and I have always been advised against having any. In addition the impact on my daily life is minimal as I don’t suffer headaches, dizziness, visual disturbance or anything. I have wondered before if I should get treated regardless. But something has definitely stopped me pursuing it. I had my first child at 31 after a dreadful pregnancy involving lots of headaches and sickness. My second was born when I was 35 and after a much better pregnancy. Both were delivered my C-Section as my obstetrician felt that labour might put too much strain on my AVM. They are now 16 and 12 and I wouldn’t change what I did for the world. Very best of luck to you. x
@Lulu1 Thank you very much for your answer. I hope you are doing all fine. Your response sounds really positive and encouraging for me
Since you also discovered it in your middle twenties, may I ask how it affect your lifestyle? I mean mainly what do you do, or change, or quit after you know about it. I read on the groups that we should avoid smoking, drinking (no problems), but also like 1-2 coffee per day, sport etc …
Hi there Yen. Glad my reply was helpful To be honest although I found out about my AVM when I was in my 20s I was aware there was a neurological problem in my teens. I had a procedure to put in a Shunt as I had a fluid build-up (hydrocephalus). At that time they didn’t relate the two conditions although in my case they are related. MRI scans hadn’t been invented and CT scans were not detailed enough to show them my AVM. They thought the fluid build-up was a one-off so it was quite a shock when it happened again. And by then they were able to diagnose my AVM. At first I was very distressed and worried. I thought my life would never feel ‘normal’ again and that I must have done something bad. To make matters worse there was no internet or forums like this one. So I didn’t know if I was the only one in the world with AVM. Of course I know much more now. Although I don’t think I have really changed anything I ever did. I never smoked but I do drink alcohol moderately and also drink quite a lot of tea and coffee. My AVM is unruptured and I also have low blood pressure which I think is an advantage. My original neurosurgeon told me that as my AVM was untreatable I should go and live my life as anyone else and try to forget about it. I have never managed to do the latter but I do try to get on with my life regardless. I am 47 now and still here, so I figure I can’t be doing anything too wrong. Best of luck to you X