Just need to talk

Hi everyone, I hope you are all doing well. I have my good and bad days. I'm having a bad day today. As some of you may know, I was 27 weeks pregnant when my rupture happened and 29 weeks when it was surgically treated. It was horrible but my baby boy is here. He seems very healthy and I know that AVM's are almost never hereditary. However, does anyone know if having the rupture during pregnancy would cause him to have a brain problem? I try to think of that as unlikely but am so worried. I recently had a "worry appointment" with my neurosurgeon and he made me feel better about myself. I still have a possibly associated aneurysm that they are not treating. I'm now so worried for my son. Thank you and god bless

I’m so glad that you survived and your baby boy did as well. I know it’s tough and you are right to worry. I’m not sure if it’s hereditary or no but my uncle had a avm and so did I. I hope everything will be ok for your son because it is scary to think about your child to go through something like that. If you need to talk I am here.

I think Dee it's totally understandable that you are concerned. Who wouldn't be! You've been through a real trauma and it takes us all a long time for this worry to go and it does come back now and again. Just remember that any worry that is spent on something that doesn't happen could have been spent on something else. Try and focus on the positives. Going through my rupture and treatment was hell, but I can't imagine what it would have been like being pregnant. You are truly strong and amazing to have got through this and so is your little boy, remember that.

Dee, bless your heart, sincerely ! so sorry you're having a bad day ! Think up ! Think positive ! You are here and your baby is here and there's NO reason whatsoever to think he may have an AVM. I am 72. yes, 72. I had 3 babies the natural way, though I don't mean to imply I didn't have any meds because I did ! I had no problems with pregnances or delivery and my children are all fine and healthy, and always have been. They now are older than you and have children of their own ! My AVM was accidentally discovered 8 1/2 years ago, much to my surprise needless to say ! I elected to NOT have gamma knife which was the only treatment possible as my AVM is too large for anything else, too dangerous to try to remove surgically. . I have no symptoms of the AVM. I am fine ! I dance for fun some evenings ! I have a good life and can barely realize my age as it hasn't changed my lifestye, thank goodness, at least so far ! You enjoy that baby ! Forget worrying ! It's not worth it and only "brings you down". Think positive and of all your blessings ! Smile ! Laugh ! Only think of pretty things ! Think of colors you like ! The clouds overhead passing you by ! You are young ! ENjoy your youth and your good health NOW !! My best to you, Sally in Alabama

Hello Dee. Not sure I'm completely qualified to address your concerns, but I'll try. I have two sons and I have a DAVF. It has never ruptured. I just live with it and the pulsing tinnitus. It wasn't discovered until 2011, but looking back, it has been growing since I was about 5 years old. I think the pressure of pushing my boys out seriously impacted it. They are 11 and 16 years old now.

As a mom, you're programmed to worry. As a mom with an AVM, you've got a boat load to worry about. Forgive yourself for this. Your son will most likely not have an AVM. He could have any number of other issues to worry about. Or not. That's the problem with worrying. My first son needed tubes in his ears after three doctors told me it was my fault he wasn't talking at 2. My second son needed an appendectomy at 9. You just can't predict these things.

Take care of yourself. Love your family. Plan for tomorrow. Embrace today.

Keep us posted.

Hi Dee. I don't see how your having a bleed during pregnancy could affect your son's brain unless, by chance, his oxygen level was compromised somehow? You did not mention this so I'm guessing it was not. If you are worried, ask his pediatrician about it. As parents, we will always worry. Having had an AVM bleed perhaps moreso. Unless you and/or your son have any genetic conditions that are associated with AVMs, they are not thought to be hereditary. Glad you have a healthy baby boy!

What a wonderful reply Sally - you are an inspiration. Looks like my treatment didn't work and it may be too complex to treat surgically - you've just given me hope

I'm sorry I don't know the answer to your questions, but just wanted to respond......God bless you and your baby. We all have our good and bad days. We're here for you.

Vin, thank you for your reply. I especially appreciate it as I don't want to appear as if I'm a ding bat la la la la queen, as if life is just a bowl of cherries and as if there's nothing to worry about OF course none of that is true and it certainy is NOT my life's experiences, both singly and collectively. We all worry. We all have concerns. I certainy do, including as recent as yesterday when I was terribly upset about a grandchild, which, fortunately all turned out very well by night ! BUT my encouragement here on this site a few minutes ago is addressing how we all hopefully can work to conquer our struggles by having a positive attitude. AT least trying to have one ! It works ! We just have to take care of ourselves. If we don't, no one else will ! We have to go forward and be good to ourselves. Worrying , to be realistic though not indifferent or insensitive, is fruitless unless there is something we can do about it which is usually not the case. and certainly isn't where our health is concerned in particular with something like an AVM ! Are't we all blessed to have an AVM and YET BE HERE TYPING ON a COMPUTER ! Smile ! Pick a flower ! Or buy one bloom ! Just one ! Put it near us and bask in its beauty , with a renewed hope for all tomorrows ! Sally

Hi Dee,
I'm also a new Mom. My son is now 13 months. I understand the worry but you have to remember that its WAY to early to tell if he'll have a brain problem period(caused by your rupture or otherwise!). Every mother thinks that something she did or didn't do could impact her child. I've come to realize being a mother is about doing your best with what you have and what you know in the moment. There is no way you could have known you have an AVM or that you would have a bleed. You have to forgive yourself and wait it out. Just like there is no way to know if feeding formula versus breastfeeding will benefit your unique little man more. You just be the best most awesome mom you can be with what you have and what you can, and your little man will love you no matter what!

Good luck with your bundle and I'm so glad that you are both healthy! Get some sleep. I know my little man woke me up twice last night.


You've already accomplished so much--delivering a healthy baby despite your AVM and surgery! From my experience, as a mother, ALWAYS trust YOUR INSTINCTS! You know your baby and what will seem right or normal. Doctors (experts) told me I was crazy to think my daughter had anything other than a Port Wine Stain, because AVMs were so rare--and later I was even crazier to think her AVM and multiple hemangiomas were related in any way--they just simply 'weren't hereditary'. Watch him for any blushing, redness, pinkness, etc. Hemangioma's would appear within the first year, most likely within first two months. My daughter's AVM was thought (incorrectly) to be a Port Wine Stain at birth--very visible, and she had 7 hemangiomas appear within 4 months of birth. Eventually, you can have your son tested for the genetic marker, RASA1, which can give you a better idea if he could have any hidden (brain, spinal or internal) AVMs that wouldn't be showing symptoms normally at his age. Bottom line--watch him and if something is off to you--find a doctor who will give appropriate tests! But first and foremost for your son--take care of yourself--your boy needs a healthy mother for as long as possible for all the important stuff in life! Hope some of this helps. Continued health and happiness to you and your new baby.

You're so right Sally, it's very hard to stay positive, especially in the early stages. But you've just given me a real boost. You are right tomorrow ( its the evening now here in England ) I'm off out to do some gardening and give the dogs more attention than I have been - You're RIGHT we are blessed to be able to type on the computer - we are the lucky ones and I need to remember that -- Thank you Vin

I am 67. I am from a very large family. No one, including grands, hreat grands have had avms either early or late in life except me…My first gi avms were detected in 2005 during a colonoscopy performed due to HGB Levels of 7. Last year one was found via cat scan in my liver. No telling where else they may be, but no one else in my family has any indication of having avms. I feel very deeply that this is a congential condition…a quirk in the fetal development. I would think if it was other than congential…at least one of my sibs…ages 54, 58, 60 and 68 and grands, great grands would have been diagnosed with avms by now. I wish I understood why me and not them but in my heart, I do not believe your child or future children would be susceptible to having this condition…my doc said I may have had since infancy but age is only now making them active.
Please enjoy your baby/s now…if they have avms, they can be addressed later…I doubt it will ever be an issue for them. Congential conditions hard to predict. Ya know! Think positive ! PAT

Hi Sally, I looked for a support group in Alabama after I was diagnosed with my AVM last year and had surgery. I could not find one, then found this website, which has been a blessing. I wish you and Dee all the best. You give wise advise. God bless, Athena Nicole in Alabama

Athena, how interesting you are in Alabama. I am in Birmingham. My neurosurgeon is at UAB. We checked my AVM by CAT scan once a year for the first five years. Each tine there was no change which is what we wanted...unless by the grace of God and sone miracle that it would disappear which was never an issue, much less mentioned. Now we check it every two years, the next one scheduled for August. What about you ? Sally

I was in an MRI on January 18th of 2013, my birthday. I'd been having dizzy spells and headaches. They found the AVM in my right frontal lobe. God blessed me as there was no rupture. It was too large for any treatments, so I had 2 embolization treatments in Tallahassee, Florida to give the surgery a better chance at a successful surgery. The surgery to have it removed was on March 8th 2013 in Dothan, AL. I live in Troy, AL. Then last October I underwent a double mastectomy after a cancer diagnosis. That surgery was done in Enterprise, AL. I just had my one year brain scan a week ago to see if the AVM was coming back. Thankfully, I got a good report. There was no sign of a return performance. Like you, I will have the yearly scans that will taper off as long as they come back clean.

All I can say is you been though the worst part I pray. Try and be positive and only have good thoughts. Enjoy yourself and your time with your family. We can’t change some things so just put it out of the picture for now . enjoy your baby and every minute you can with him. God bless you.

After living with my AVM fot most of my life, I will tell you there will be bad days with alot of difficulty, but they are always followed by a good day. It happens just enough to keep you sane and makes you appreciate a good day all the more! It took a lot of work, but I have come to realize my AVM and multiple bleeds, and ALL the trajedy that came with it, has been a blessing, and I lead a life, much more fully than I would have, if I hadn't been threatened with losing mine. The things many take for granted or go unnoticed, are SO appreciated by me.
I am now recovering from a craniotomy, after living with an AVM for 40 years. I struggle with learning how to live without "my little friend." It was part of me and now it's hard to realize it's gone. Then I read talk about them coming back or growing. All I was ever told, is that THE THING IS A GONNER and it's NOT coming back.
As far as your worry goes, I thought it best to pass on having children. I was told how hard pregnancy is on your blood vessels, and more so, raising children. I would want to know exactly what drugs they gave me in the hospital while I was pregnant. That was always my worst fear, NOT that the baby would have one too. The effects of drugs are important to know. You are so lucky to have the baby. Sounds likes your son was meant to be here!
I can't imagine recovering from brain surgery and having a newborn. How are you doing and what helped in your recovery?

Dear dee , I had my baby boy nearly 26 years ago and as far as we know he is avm free ! It was always one of mine . No one else in my family has an avm .

Dear see,i look at this site everyday and never reply or get involved with conversations ,I have been living with my brain avm for six years.i have two sons 10 and 5 both suffer headaches I’m constantly worried think it natural .we just have to enjoy every second we have and enjoy our children x good luck to u .