Not hereditary, but twins?


So I know that the studies show that AVMs (and other malformations) aren’t hereditary, but I was wondering about my twin. I was just diagnosed a couple months ago and we’re still in the early stages of stability assessment. - I have an identical mirror twin. We are from the same egg and the “mirror” part (she’s right handed and I’m left handed) means that we developed together as long as you can be before we split. Any longer and we would have ended up conjoined twins. Since we developed so long together I am worried that she might have the same issue.

I haven’t told her about my own diagnosis, but I’m not sure of this is something that she should possibly get checked out too. I mainly worry because she has stress and anger management issues. She becomes severely upset over little things, every day and I worry that her high blood pressure might cause an issue if she Does have it.

Is that a valid concern? Has anyone read any studies about twins and AVMs? Is this something that she should get checked as well? Please let me know your ideas and opinions.

Thanks for your help everyone.
Sorry if there are any mistakes above, I’m writing this on my phone.

What an interesting question Taylor. I do not know the answer to twins and AVMs but have you checked with your doctor since you were recently diagnosed? I would imagine it is probably a good idea for your twin to be checked. Where is your AVM located? Maybe after checking with your doctor, then you can talk to your sister with some information behind you. Maybe you could also have your parents intervene if necessary to make it easier for you and her. Please let us know how things go for you Taylor. All the best.

Thank you Debra. I won’t be seeing my doctor until October for my follow-up. Luckily right now the vessels are dilated but not so bad that there needs to be a rush on treatment. It’s located in the Pons area of my brainstem. Which also is a low-flow area and that’s why they aren’t too concerned as of yet. We’re just doing what I call the watch-and-wait. I wanted to wait until my next MRI to see where it is in stability. I agree that having information behind me would definitely be the best choice. I’d also like to be able to tell her “hey, mine’s stable so try not to worry”. My mother would definitely help me with discussing it with my sister.

I think waiting until October to ask my doctor will be fine, but I’m not sure. Since an AVM can be anywhere and if my sister does have one that it could be in a high flow location. Do you think waiting for my results first would be fine or should I call my doctor and ask sooner rather than later?

This is a very good question that I think not even a doctor will be able to answer due to the rareness of these events… I would highly consider getting your twin checked also just to be safe… God bless!

Ethically, she has the right to the AVM info. You were from one placenta; and non-genetic AVMs often arise from the placenta. You share the same fingerprints, right?

Is there any way you acquired this AVM? IDK. I have always heard they were there since birth.

Surprising @ her temperament being so different than yours. Could an AVM possibly be pressing on the brain? Wishing you all the best.

I should add that I am not a physician, just telling you info I picked up over the yrs.

Some AVMs are genetic. There are many on my maternal grandfather's side. That is even more of an issue.

With HIPPA, you can give her physician but the physician cannot say anything to you. That might be a resource in deciding how to help her.

I’m actually not sure about he fingerprints thing. Because we are mirror twins we tend to have everything reversed.

And full disclosure, we actually share the same type of temperament. I was diagnosed bipolar when I was 19 (I’m 26 now). I elected to do therapy as well as medication to help stabilize me. My sister on the other hand decided not to get any treatment and hopes to do it on her own. - so I am now in control , low stress, and started a blood pressure medication for my migraines. She still suffers from constant stress and anger.

Also, side note. I’ve always called her the “healthy twin”. Although we both are bipolar she has no other ailments. I suffer from chronic migraines, asthma, sinus disease, tons of allergies, hearing loss, appendectomy, dysplasia of cervix (removed), melanoma on bottom of my foot (removed). And now AVM in Pons.

We are very different when it comes to our health.

Please, never feel you need to disclose more than you wish. None of my beeswax. I just offer suggestions, based on what I have learned. It may or may not apply.

Haha! Perhaps shows the effect of environment vs genes.

May I ask if your heart is on the opposite side of hers? No need to answer. Your description of your twin-ship is fascinating, I never knew that facing each other can lead to conjoined twins. I wonder if there is a way to separate them while in gestation? I am glad all worked well with you.

I wish you well with your twin. And also with your AVM.

I think it would be very interesting to study the nature vs nurture in twins. - and Nope, the egg separated early enough that only some of the mirroring took place. But both of our organs are on the correct sides. - Thank you for your ideas and I agree that she deserves the knowledge of this. We have been estranged for almost a year, and I didn’t want to bring her into my issues. But she deserves to know since it may effect her too.

Beautifully said Taylor. I know this is a difficult situation for you, so I am very glad that you have reached out to this support group. Perhaps you would like to talk to your Mom about it too and see what she thinks or that best way to talk about with your sister. If she is already angry, chances are your twin might not do anything upon receiving news of the AVM. All the best Taylor and please keep us posted.

Hey. I have an identical twin. We wondered the same thing. He ha MRI and MRA. Both came back clear. Due to all the unknowns, we had no problems getting the test. That’s not to say he doesn’t have one but that not where mine is. We were advised to just be mindful of symptoms.

Thank you Jeremy. It’s good to hear first hand from another twin who had the same thoughts I’m having now. I am extremely happy to hear that your brother is in the clear. And THANK YOU for mentioning that you had no problems getting the tests. Cause that was my second concern, for her. My initial MRI was to check for tumors since I have substantial hearing loss on my right side. So my insurance covered the MRI for valid reason. The doctors just stumbled upon the AVM while searching for tumors. But since my sister doesn’t have issues or symptoms I was worried she wouldn’t be able to get the tests.

Apparently there have been documented cases of an AVM showing up on a scan where there was a previous clear scan. It is still believed that most are from birth and nonhereditary.

Agreed. My MIL had a brain AVM; all 9 children were covered for MRI/MVA.

Also, I agree with letting your mom handle this. Or whoever does not agitate your sister?

Unrelated to your exact scenario, there is a micro-deletion on a chromosome that can cause genetic vascular anomalies. q22d or something similar. It can cause digestive illnesses and psych issues as well.