Ladies, can anyone advise on having children

Does anyone have any advice on what your medical professionals advised re having children after your AVM was treated?

I have one son, got married two weeks ago and we were going to try for our second in a month or two. Then i got my AVM diagnosis. At the mo, I’m in the dark and awaiting an appointment to find out what the next steps are… But all I can think is that sometime along this journey someone is going to tell me I won’t be able to have any more children. I would be utterly devastated if this were to happen and it’s currently the thing I’m most worried about!!! I’m already heartbroken at the fact i may have to ‘put off’ having a second baby for a couple of years - I really despise the lack of control I have now and that my life has been put on hold (but I’m ever grateful I have been diagnosed before something awful happened)…

Can anyone help me or reassure me that one day I will be able to have more children?

Hiya Mrs F2157

I myself have had 5 children before I knew I had a brain avm, all were normal pregnancies and births, and all children were healthy. This is a fantastic site so welcome to the family. There are people on this site who have had pregnancies whilst having an avm and also people who have gone on to have children once their avms have been treated so I’m sure that you will expand your family!!! Hopefully someone will reply to you who has had a pregnancy whist and after they have had an avm.
Take care Amanda.

Thank you for replying! I’m so grateful I’ve got to experience one pregnancy and (albeit a traumatic) birth… But I long to have a big family and I guess at the moment I’m struggling with the possibility of that being taken away. I haven’t read anything about people being advised not to have children after an AVM, but my thoughts are in overdrive. I was worried about never being able to fly again too, but someone else’s post on this site has reassured me I don’t have that to worry about!! Thanks again x

Sarah,

I’m pretty sure we have a couple of Lady members who are currently expecting. You can search for “pregnancy” using the grey magnifying glass icon on the green banner. We also have a section on pelvic and uterine AVMs where, as you might imagine, the risks of having a child with an AVM adjacent can be higher than an AVM elsewhere.

From what I’ve read, you shouldn’t feel unable to have children but should discuss with the doctor, and the level of risk or specific things to remember (if any) once you’ve had your AVM treated.

Hope that helps,

Richard

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I had my AVM rupture when I was 20. I had 3 surgeries and my OBGYN suggested having my tubes tied, because the risks (for me) would be too great to be pregnant. My AVM was at the base of my brain stem, and it affected several things (including my ability to speak) when it ruptured. For me, it was in my best interest to limit the chances of having my own kids. I would advise talking to your doctor, OBGYN, and neurologist.

Hello Sarah,
I have flown twice this month for work, it was a bit stressful as previously I had flown for holiday and had been able to rest after flying. But this week I went to Rome, had meetings, visited ateliers and it was fine, tiring but fine! It was very much mind over matter- it will be two years since surgery this June,
Lx

Hi Sarah. I have known about my AVM since I was 14. Some reports and doctor say we shouldn’t have children as pregnancy can put pressure on fragile blood vessels. However perhaps recklessly I went on to have 2 children and I have never regretted in for a second. When I was expecting the first I did get really horrible headaches and sickness for about 5 months. But there was none of this with my second. I was also advised not to go through labour with either child due to increased pressure in the brain. So I gave birth by C Section both times and didn’t really suffer at all afterwards. Best of luck to you. x

Hi. I found out about my AVM after my first and only pregnancy. I had a seizure and had an emergency csection a week before my due date two years ago. I had a second seizure in the beginning of this year and finally had an MRI and angiogram done that confirmed I have an unruptured AVM. At the moment I chose to leave it alone and being monitored by a neurovascular surgeon. Per my OB doctor, she personally would like to get the AVM taken care of before becoming pregnant again due to obvious risks. But she also stated that these days technology is advanced enough that I can be monitored closely if I decide to be pregnant with an AVM untreated. C-section will be my only option for delivery. Hope this helps.

Hello, I have an AVM of the left occipital lobe with a bleed almost 30 years ago. At 42 I had a beautiful little girl. They recomender a C-section and had a Neurologist there “just in case”. A bleed was/is always a concern with AVM. The delivery gave me ALOT of seizures so I was kept in ICU for 3 days until they subsided. Violet is 13 now and though I will ALWAYS have the issues I do, Right Homonymous hemianopsia, PBE, vision flashes on and off at times and ANY type of shadow to light changes are seizure causing To name just a few, the thing that bothers me most is that I ALWAYS FEEL IT. Pressure , pain are just life for me. 99% of the time I AM THE ONLY ONE WHO KNOWS ITS HAPPENING. You adjust as time goes on to just breath through the oddity you feel, smile and nod at what you missed and slide back into the conversation, 98% standing inches away never even knew there was a moment where I held my breath…Life is goooood. You make those beautiful babies and never look back…besides I could have died in a car crash of chipped a tooth today, neither of those things happened EITHER… here I am at the END of another day, 30 years later no dents in my car, a pretty smile AND a beautiful daughter, 1 of 3