Hello. I am a 31yo female who is 5 months pregnant and has had an avm in my knee since I was 12. I also have birthmarks from my waist to my knee on the same leg. My thigh and knee are swollen, hot and painful. I have been dealing with this for a while and have seen specialists including interventional radiologist. I have had 3 embolizations with no success. My pain seems to be getting worse (im assuming due to the pregnancy and hormones). But I’m noticing that the pain is more in my thigh and around my birthmarks instead of where my AVM is located which is my knee. Is this normal with others who have AVM’s? I go on and off between trying to find help and just trying to deal with the pain. Sometimes the pain is better than other times. However, now I have a baby to think about and I can’t help thinking that this will eventually somehow harm the baby? I can also be super paranoid with things like this, so that could be the case too. Anyway, The more I stand and the more activity I do the more my leg hurts. I haven’t had any bleeds or any issues like that so I know I’m lucky in that aspect. I also just don’t understand why I’m having the pain where I’m having it. If anyone can share some insight I will be very appreciative!!! Thank you so much!
I don’t know about extremity AVMs but from what I’ve read on here, I would think your blood pressure is different with carrying a baby and maybe your veins dilate somewhat. I think ladies sometimes have increased water retention with being pregnant and I wonder if that is a bit vascular as well, so it maybe the hormones are making your AVM loosen up a bit and that’s increasing your pain.
A lot of the “managing” an extremity AVM seems to be about compression stockings or other such things, to manage the dilation of the veins. If you can get something to keep your thigh under a bit of pressure, that might help but always get advice from your doctor. Like I say, I’m no expert in this area.
Your birthmarks may also be AVM-related, so consider them as part of how you look after yourself rather than considering them unrelated.
Hi Stephanie. I’m afraid I can’t help with where your pain is located. Possibly only a doctor could tell you that. BUT I have been through 2 pregnancies despite having an AVM. Mine is a brain AVM though and during my first pregnancy I suffered from severe headaches and vomiting for the first 5 months. I literally couldn’t keep any food down and went off everything. I remember being told that pregnancy amplifies the symptoms associated with AVM because of the increased hormones floating round your body anyway. I have 2 healthy children now though and they don’t seem to have been affected by mum being an AVM-er. I’m sure it will be the same for you. Might you need to use a stick or wheelchair as your pregnancy progresses? Very best of luck. Lulu x
Hi Steph,
I’m an extremity AVMer though mine is in my calf. I would say with both of my pregnancies things grew and got worse. They wouldn’t do embolization while I was pregnant because of the chance of hurting the child. I did do compression with both kids which helped and my IR also suggested a modified work schedule so I wasn’t on my feet as long. For me I also had to keep my leg elevated in the evening, and iced as much as I could tolerate. Mine is deep and not associate with a birthmark but I could understand how increased blood volume associated with pregnancy could make that worse. The AVM isn’t likely to harm your child, just make you uncomfortable. Tylenol is about the only pain med you can take some doctors will allow narcotics but that isn’t so great either… You might ask your OB or IR if you can go on modified work until after you deliver. You can have an MRI while pregnant (though some places don’t like to do them with contrast), and it wouldn’t hurt to see if things have grown or changed. Then I would suggest getting treatment once things settle down and before your little one is walking. For me it was a little over 9 months before I scheduled another embolization. I knew at that point my son would take breast milk in a bottle and my husband could handle things while I recovered. I also wanted my body to get rid of most of the pregnancy hormones that cause excess growth and the additional blood volume. There are some threads on the Extremity group you might want to look at about pregnancy and AVM.
Best of luck on motherhood!