Fertility and Pelvic AVMs

As a 25 year old woman with a large muscular pelvic avm of course my doctors are worried about radiation from scans and embolizations but they have never specified any risks I may be facing. I have had 2 X-rays 7 CT 2 MRI 2 embolizations and a needle guided biopsy. Before knowing it was an avm seeing a fertility specialist to tap about preservation options was suggested but I cancelled the appointment when they diagnosed me and was told they could treat me. Now that the avm continues to cause problems I wonder if I’m harming my potential of children due to more scans and surgeries. Finding out this disease has stopped my ability to have babies would be a very difficult thing to deal with so I’m wondering if anyone has had similar thoughts, concerns, experiences, or advice that can be helpful! Thank you friends for the support!

First of all, I am no doctor, but I have known about my AVM for over 3 decades. (I am 52 now.)

I was told from my neurologist and neurosurgeon that my AVM was genetic, and that I could give it to a child that I might have. Since my AVM was one large nasty one, I decided that I would try my best to NOT have a child. What I went thru having gran-mal seizures, in my 20's, before the surgeries, I would try NOT to give that to a baby. So far, we have been marries for about 10 years, and have been successful, and we are still very quite happy with our lives in so many OTHER ways.

I wish to the best in what ever decision you will make.

Lisa A. Stuckel/Kane

I am 28, no children yet, and often wonder this too. I had my 3 AVFs (dural, scalp, face) embolized recently and there is the fear of them returning, during or not during a pregnancy, and if the embolization, embolization agent (in my case, onyx) or a returning AVF can complicate a pregnancy or compromise the health of a baby. What did they use to embolize your pelvic AVM? Have you tried/been able to conceive?

Hi Emmy. They have used glue and micro coils on my AVM. I just last month had a yearly ct scan and my vascular surgeon was shocked to find that my avm has not grown as much as it usually doesn’t a years time so when we asked about having a baby she said there’s no time like the present. So nothing yet but we are trying to conceive now. I was told if and when I do it will be high risk and there will be a lot of monitoring and pain managment involved but in the end it will all be worth it.