Hi all, I’d like to introduce myself and I am new to the group. I am 7 weeks out from my partial craniotomy surgery due to my ruptured AVM. I underwent angiogram + partial craniotomy + angiogram to ensure it was taken out. Recovery has been brutal to say the least some days extremely lonely. I am currently 36 weeks pregnant as well so this has taken a toll on my mental and physical health. I am grateful to have found this group and understand that i am truly not alone. I am 31 years old and I am so worried after each sneeze, cough, laugh because I’ve been told that a re bleed is ALWAYS possible because that’s life. I am also concerned about recovery and any other deficits I will experience. The only major things i am dealing with now is vision loss but don’t know if symptoms will worsen or get better.
Welcome @Karina!
Thank you for expressing so well how all of the brain AVM people feel when we go through what you’ve been through! The exact reason this site was created was for the same reason you’re finding it beneficial is to get rid of that loneliness. Welcome on board!
I’m trying to think of examples of people I know here and whether their eyesight stayed the same or got worse or got better to see if I can give you a bit of encouragement. I think the answer is that some people stay the same, some people have improvements and yes, I can think of one person whose eyesight has been badly affected over time, though I think that was due to further bleeds that he had rather than some gradual degradation. So I think you should be wholly positive.
Seven weeks is very early post op or post bleed: there is plenty of recovery time to be had!
Very best wishes,
Richard
You sound like you are doing so well all things considered.
Keep positive, it’s early days!
Karina, you have so many things at one time! Give yourself lots of grace and know healing is such a process and takes time. Your pregnancy brings constant change to your body and mental space as well, so you need lots of self-care! Take your days, sometimes hours at a time. Love yourself and focus on all of the positives. When my pulmonary AVM was found, the doctors said it was a miracle that I didn’t experience a rupture during child birth, so I am grateful for that for you as well!! I’m sending light and love your way! You’ve got this!
Hi Karina,
Welcome to our community! I see you liked my post on another thread so I’ll keep my introduction here brief.
I am close to your age and I have survived two bleeds. I am currently waiting to see if my third treatment of Gamma radiation was successful.
I am hoping to get pregnant after obliteration is confirmed, although my doctor had told me I didn’t have to wait. (After my AVM grew back following the first two Gamma Knife treatments, I’m skeptical to trust my doctor until the AVM is “gone for good.”)
Would it be okay if I messaged you sometime to ask questions about pregnancy following an AVM bleed?
You’re a rock star, and I wish you all the best as you approach your due date!
Love, Julia
Oh, I see you also asked about eyesight. I had double-vision after my first bleed at age 10. It corrected itself within a year, and in my teen years I started wearing glasses.
I had double-vision again after the second (less severe) bleed, and it corrected itself after a few months. I currently have a blindspot in my upper right peripheral vision. At my next optometrist appointment I’ll see if it has changed at all.
Hello Karina, my daughter regained 95% of her vision after her rupture 8 months ago. She had no changes in vision after the craniotomy. Congratulations on your pregnancy.
Welcome Karina! I was 26 when I had my large occipital AVM taken out. I lost my left peripheral vision. It didn’t get worse or improve. It was permanent. Everyone has a different in outcome depending on how much brain tissue is taken during the surgery. I hope yours was minimal. My two pregnancies were blessings. Best wishes on your pregnancy. I’m a 34 year survivor but had a bleed to the original in 2024. I underwent Gamna knife again after the embolization. I agree with the others stay positive and look to each day as a gift. You are a survivor and here for a reason. Thank you for sharing your journey. Best wishes.
Thank you so much for the warm welcome Richard 
I will take it day by day.
Thank you for your encouragement! The rupture happened during a case of morning sickness at the start of August 205. Due to baby’s size they pursued surgery in September 2025 since I was stable. The bleed was contained and I didn’t have any neurological changes and felt it was okay to send me home. The most I dealt with at that time were headaches which I was able to manage with ice packs on a nightly basis.
I am so glad you are still with us Julia! Thank you for your kind words and you are absolutely welcome to message me anytime! The interesting thing about me is that my bleed occurred while pregnant. At the time I was 7 months so both baby and I survived the bleed together and underwent all of the procedures together! She’s a warrior already.
it makes sense to me that you are waiting until the AVM is gone. My rupture occurred one morning that I was experiencing morning sickness. Suddenly during the morning sickness and pressure I lost my left peripheral vision. It was accompanied by a major headache that I’ve never experienced before. I asked my husband take me to the hospital I knew something was wrong
Julia you are so strong with dealing with double vision for so long. I’m glad to hear that it did correct itself. I currently am experiencing the same as you and have q blind spot towards the bottom left of my vision but also lost right and left peripheral view on my left eye and left peripheral on my right eye. This was new after the craniotomy!
Keep me posted on the optometrist appointment I am curious to know if there are any improvements. Wishing you all the best
Do you notice the double vision all the time or just at certain angles? For me at first, the double vision was only there if I looked down. I adjusted my work desk to about a 40° incline which allowed me to see the papers without double vision. I can’t say for sure if that helped correct my vision, but it made it possible for me to do my schoolwork in the meantime.
When the rupture first happened I did have a little bit of double vision but now after the craniotomy I don’t have that issue. I am only dealing with the peripheral vision loss. I do have an appointment with an optometrist this week
Hi @Karina
Welcome to the family & sorry to hear about your recent experience… I am however glad you have survived & I know how tough this can be.
Please know it takes time like anything & confident once you give birth, a lot of your worries will ease as you concentrate on the little bundle of joy you bring into this world.
Keep us posted on your journey, you are not alone… God bless!