I thought I’d start a thread for the rare few who have spinal AVM’s and want to have children or are pregnant.
I have a Spinal AVM in T9-T10 it’s inside and outside of my spinal cord so considered too risky to operate on unless absolutely necessary.
My AVM burst when I was 21 (2015) which is how it was discovered (although it did take 6 months for them to find it!). My symptoms are mild with only numbness in both legs. Everything else has recovered. I do occasionally have pain in my back but it goes away quickly.
I’ve successfully had 3 children and it’s had no effect on my AVM which is amazing considering I was told pregnancy increases the likely hood of it bursting by 20%. However, I could only have my babies via C-section under general Anaesthetic due to the risk of it bursting in labour and with a spinal tape or epidural.
So if you’re in this boat I’d love to hear from you! I don’t know anyone with a spinal AVM and even the nurses and doctors don’t always know what it is and have to explain it to them as it’s so uncommon!
I had a congenital avm from birth at T8/9. I had a boy with natural birth as I was not aware of my problem at the time. Fortunately all went well without complications. My pregnancy was uneventful too.
Recently I had problems with my knees and some sensory symptoms in my legs- burning, numbness-when doctors discovered mine. I had a surgery as it was on the surface of the spinal cord therefore manageable. Surgery was successful, currently recovering from it. Only remaining symptom is numbness in both legs. all clears up in a couple months.
I was diagnosed in July 2023 with a large spinal AVF in my neck (C1-C7). I had a pregnancy 19 year prior…as I didn’t know at the time that I had this condition. Symptoms did increase significantly during my pregnancy but thank goodness I made it through (neck pain, lower back pain, and a loud swishing sound in my neck - bruit). Back and neck pain was too severe from there on to even consider becoming pregnant again…I knew my body would not be able to handle another pregnancy but didn’t know why until 19 years later when I was diagnosed. I was slowly but surely losing feeling and function in my arms, legs, hands, feet etc. It was such a slow process I learned to adapt and live with it - until I couldn’t. Thank goodness I was able to be treated via spinal dural embolization…14 platinum coils were used to shut down the AVF. So far so good. Long tough recovery (its been 10 months since the procedure) but I’m starting to feel better than I did prior to the embolization. Knowing what I now know I am thankful to have survived my pregnancy and would never consider another pregnancy. I regained feeling in my feet and hands etc and am able to walk and just started jogging. Just started physio to regain strength in my arms and neck. Every doctor or nurse who has treated me mentioned it was their first time coming across someone with a spinal AVF. A unique and challenging health condition for sure. So thankful for this online community.
I have a brain AVM, been living with it for 12 years and had a brain bleed 11 years ago. I was so fortunate to have been able to give birth to 2 beautiful kids, but also had to be via c section only. I had a great neurosurgeon and OBGYN, who had experience with dealing with high risk pregnancies. However, after the birth of my first child, I’d started developing micro bleeds. Tiny little hemorrhages that have been occurring after my first born, and my Neuro explained that due to pregnancy and child birth hormones, this could happen, but not much can be done about it as it doesn’t show up on a scan and I deal with it, lasts about a week until I can get back to normal.
About 3 years ago I found out I was pregnant with twins, and obviously the risk now is significantly higher, however my OBGYN had retired when Covid hit and I had to use someone else. Unfortunately, my twins had no heartbeats and I prayed and held on as long as I could but nothing changed. And I lost the twins by giving birth in my bathroom to the foetuses and placenta. 2 days later I was readmitted to hospital due to this new doc’s negligence of not checking my blood levels and I had to have a blood transfusion since my levels had dropped to critical. But I had my kids to get back to so I fought as hard as I could to make it back to my kids.
I now have venous hypertension, pressure built up in the brain and just living with the headaches and the micro bleeds when they happen, praying not to have a hemorrhage.
So many medical personnel don’t understand the condition, but my previous docs were amazing and worked together to get me through my first 2 pregnancies. I hope you’re able to find docs that understand. Perhaps check with your Neuro who’d be the best and have them both monitor you.
I’d like to have another baby, but I have to weigh the risks and I’ve realised it’s too high a risk, which not only I’d have to pay, but I can’t do that to my kids.
I hope this helps. And I wish you all the best and hope you’re able to get the right doctors when you need it.
My situation may not be of any help but if someone is reading this and benefits, it is worth it. I wish someone had told me. I had an AVM on the brain when I was a child. I assumed it was over and having natural child birth was not an issue. The day I gave birth I had a grand mild seizure. The doctor in the ER department was furious. So, you may want to express the severity with your gynecologist. I am so thankful God watched over him and kept us both safe.
Oh wow very similar location!
So glad you didn’t have any issues during pregnancy and birth!
So glad your surgery went well! That would have been a huge relief I’m sure!!!
Oh wow so glad you made it through your pregnancy without any significant complications!
So glad you were able to have surgery and get it removed I’m sure it was both a scary time but also a relief! Praying you keep on recovering and get stronger!
Oh my goodness what a journey you’ve been on!
I’m so sorry for the loss of your twins. I’m sure that would have been a very traumatic time for you and your family.
So hard when health issue get in the way of wanting more children! My AVM had some slight signal changes last year and went against advice to get pregnant with my 4th as I felt completely normal with no symptoms. Time will tell if that was a good idea or not. So far so good at 16 weeks but I’m getting an MRI this afternoon so very keen to find out what’s going on with my AVM and if things are stable or more changes have occurred. I would love to have 5 kids but I’m not sure that will happen with my AvM and also I get HG (the severe form of morning sickness) during pregnancy which has been pretty awful to deal with.
I’m assuming your AVM is not able to be operated on then? I’m so sorry you have to deal with symptoms from it - no nice to have to deal with at all!
After reading your story and others about AVM’s in pregnancy I feel so incredibly thankful that I’ve even been able to have 3 children and 1 on the way with no symptoms. I think that I must be an exception as I haven’t heard of anyone with an AVM and more than 2 kids.
Apologies for the very late reply. Thank you for your kind words and I’m praying that you and your little one will be just fine. How are you doing? I’m sure you’re due soon? Please keep me posted. Wishing you and your family all the best and pray all goes smoothly with your pregnancy and soon you’ll be a mama of 4
Hi Suraya,
I’m doing well. I’m 21 weeks now and due in August so still got a little while to go but I haven’t had any issues with my AVM so far which I’m so thankful for. My MRI results show nothing has changed since last year so that’s really positive and I’ll get another MRI in November to see how things settle after birth and whether a 5th child is in the cards for us. My neurosurgeon has never heard of any other women being able to have 4 children without issues so praise God that it has been the case.
I’ll keep you updated as the pregnancy goes on and if I have any issues and when baby is born
all clears up in a couple months.
