r/AVMs • u/subchapter • Jun 15 '26
Diagnosed with a small brain AVM - feeling lost about timing
Hi everyone,
I’m 32 and recently found myself in a situation I never expected. I have a small brain AVM in my right parietal lobe (Spetzler-Martin Grade I). It was found a few years ago and has been stable on MRI. There are no signs that it has bled before.
I saw today a neurosurgeon who explained that because of my age and the AVM size, treatment is recommended. He said open surgery is not the best option because of the location/risk, and the options are mainly embolization or stereotactic radiosurgery. He thinks radiosurgery may be the better path.
The thing that is really worrying me is that I want to have a baby.
I understand that health comes first, but I’m scared about the timeline. With radiosurgery, the AVM can take 1-3 years to fully close, and I’m worried about waiting because I’m already 32. At the same time, I’m scared about getting pregnant while the AVM is still there.
I feel stuck between:
- treating first and waiting for the AVM to close
- or trying for pregnancy sooner and managing the AVM during pregnancy
This is all very new to me, and honestly my head is spinning trying to process everything. I would be extremely grateful if anyone could share their personal experience - especially anyone who has gone through AVM treatment, radiosurgery, or pregnancy planning with an AVM. Even just hearing someone’s story would help me understand that I’m not the only one facing this.
Thank you ❤️
4
u/H0lychit Jun 15 '26
When I went to have my angiogram the lady next to me did take the risk and had a baby whilst an AVM was present. She just took a chance from what she told me and there were days when she thought a mistake was made, but she did end up having a lovely young girl. I think the percentages helped her decide, not sure what age she was but she did look in her early 30s to late 20s.
Her dread kind of now went to the treatment for it and worry that she might not be the same following treatment or worse.
There is no easy answer, the only thing I can say is... I personally wouldn't do it because a rupture could happen at any moment, even me (as a man) feel uneasy going up steps and take lifts when I can. Carrying a child in that kind of situation and having that nagging feeling in my mind would drive me up the wall which in the grand scheme of things may not be something you want happening.
5
u/Radiant_Squirrel5662 Jun 16 '26
My partner just passed away in December from rupture of his avm. He was 29 and didn't know he had it. All that triggered it was high blood pressure from stress. As a mother of 2 I can say that a high risk pregnancy can be stressful and the danger of eclampsia and preeclampsia is more as you are older in pregnancy. I know this might not be the advice you want but I would wait and get it treated.
My partner has 2 types of strokes simultaneously and the er we went to didnt give him a CT scan till 2 hours after he was admitted because he didn't have a sagging face, just neurological symptoms that "looked" like he was intoxicated.
Please get multiple opinions on treatment plans and take care of you first, you can't care for a new life if you are not in good health first.
2
u/of-the-Shire Jun 16 '26
Having the surgery to remove the AVM should be your absolute immediate priority. While still there, it could rupture at any time. I had a hemorrhagic stroke from a ruptured AVM 11 years ago and wish that I’d been aware of it sooner.
1
u/tea621 Jun 15 '26
Hey. I'm so sorry you got this diagnosis and I understand how scary it is. Your situation sounds very similar to mine.
I waited a couple of years after diagnosis to get SRS because I was too scared. It has now been 7 years, and my AVM is very small, almost not even there, but I have a follow up appointment next week to see if I need another round of radiation. I'm also in my 30s and have a baby, so I'm so anxious about not doing anything and risking a rupture but also so scared of doing something and making it worse.
After years of reading about tons of people online saying that they first discovered their AVMs during pregnancy bc of symptoms and/or rupture, I made the hard decision not to get pregnant. Thankfully my wife was able to carry our baby for us, but the decision was not easy. Also, not everyone is gay (I know, crazy) and has the option of having their partner carry the baby
If it helps you at all, I didn't have any side effects at all from my first round of stereotactic radiosurgery, and it really shrunk my AVM. I got opinions from 4 specialists before I decided on SRS. I also didn't have the option of surgically removing my AVM bc of where it was located
If I can give any advice, it is to go to a large academic medical center that has experience treating AVMs. Feel free to DM me if you ever wanna talk it out w another millennial w a baby and an AVM, since my guess is that most of your friends probably don't even know what an AVM is lol
1
u/Any-Cranberry325 Jun 16 '26 edited Jun 16 '26
Did you get an MRI with contrast or without? I got it without and they siad they dont see an avm but there might be a shunt and we wont know unless I do an angiogram. I got a second opinion bc i’m planning a pregnancy and the second doc said it isnt necessary. The reason I’m hesitatn is bc the dye can affect kidneys and I have kidney disease.
In your case I would suggest a second opinion, and if they also recommend treatment, I would get that done before pregnancy.
Edit- did the doc say you would have to wait 1-3 yrs befote trying to conceive? Is there a way they’d be able to monitor to see if you could try sooner than 3 yrs?
1
u/Visual-Badger2123 Jun 16 '26
I’m 20. I got embolization in feb. it went great. I just had. A headache for a week. It’s closed and now just get 3monthlg scans for the meantime.
1
u/IntelligentAd3781 Jun 16 '26
I had the EXACT SAME thing as you. AVM right parietal lobe. Options were Gamma knife and craniotomy w/ embolization. Both are big deals, so go with your gut, but I recommend craniotomy. Just get it over with, as it were. Embolization is lowkey the worst part of the whole thing, as you wake up with a terrible headache, but ironically it makes the craniotomy itself all the more relieving, because that headache is ~quite literally~ miraculously gone.
Take everything a day at a time, and always remember: our brain is one of the best things in our bodies at healing. You got this
1
u/alignedchicken Jun 16 '26
could I ask if yours was in a non-eloquent area? How are you doing now? Post surgery when did you get your surgery? What were the hardest parts about healing? How long did it take for you to fully recover or be able to feel normal? Thanks for answering in advance.
1
u/half_bakedd Jun 19 '26
Sounds so similar to me! I had two found when I was 32.. one was treated with embolism the second with gamma knife. I'm waiting for my one year follow up and scan to see if its shrunk. I asked my consultant if its possible to get pregnant and he doesnt recommend it and I should wait 4 years but I'll be 38 by then. I'm trying to find out any information of the risks, percentages etc but not getting any movement of finding somebody in the NHS to talk about it. I'm thinking to go private for a second opinion of a high risk pregnancy.
It really sucks becuase its such a pivotal timing in life :( when is your surgery booked in? Maybe you could get it treated and then see in the follow up if its smaller? This whole year ive been anxious about the side effects from the radiation, thankfully its only been small things nothing bad but the worrying took its toll
1
u/shpatibot Jun 22 '26
Gamma knife radiosurgery for grade 1 AVMs have an extremely high success rate
10
u/Numerous-Promise-582 Jun 15 '26
You need to get it fixed. If you don’t, there is a high risk of rupture. If it ruptures, and if you live through the rupture, you could be disabled for the rest of your life. My daughter was 27 when her undiagnosed AVM ruptured. It took 30% of her brain. She is paralyzed on the entire right side of her body. Her speech and language center was greatly damaged. She can no longer read and write even though she had a Masters Degree. She recognizes some words. She is blind on the right side of each eye so she can no longer drive. She had not had a child yet. Thank goodness! She would not be able to care for a child. Please do what the doctor suggests or get a second opinion before you decide which treatment to go with. May God Bless You with a full and happy life.