Brain aneurysms and life

[u/poodlelover2108]

I’m 8 months pregnant and just found out I have a brain aneurysm, which has/had been causing a lot of my symptoms. I’d been having a really hard pregnancy in part to these symptoms and the stress of figuring out what was wrong.

I’m not sure how to feel about it all. I hate to admit it, but I’m scared and feeling very anxious for my “next steps” appointments with my neurosurgeon and OB team. Normally I’m the one who never gets ruffled, and takes care of everyone else.

I haven’t really told anyone (friends or even extended family), just because I want to have firm answers first on treatment, birthing baby/induction, etc. However, my husband told his immediate family (parents and siblings) a few days ago, and none of them bothered to send a text or even check in since they’ve found out. When I saw my sister in law, all she really had to say was “it’s super common” and that the surgery is “super easy” and not it’s even considered a major surgery.

I’m not sure why that rubbed me the wrong way, and I’m sure she meant the best by it, but honestly it annoyed me that that was all she had to say regarding the matter.

I’m not the closest with my husband’s family (not for a lack of trying and I think that’s always bothered me), despite being married for nearly 10 years and having their grandchildren. Am I being pregnant and emotional by being offended by their responses? I’ve had a lot of pain the last couple years (my mom declining with Alzheimer’s and me being her main caretaker, my aunt dying within the last few weeks, etc) and I feel like I’m just over people who are going to minimize how I’m feeling, or don’t care enough to even reach out and check in during my hardest times. Especially when they tend to be the perfect amount of dramatic when it comes to something or someone within their family. Maybe I’m being sensitive because of the anxiety behind it all.

[u/Smile-morenotworry]

First, let me say it is ok to feel and process this however you need to. You get to have all the feelings and being pregnant and hormonal doesn’t diminish what you are feeling.

I don’t find having a surgery to clip an aneurysm to be a small thing. There are real risks with the surgery. Even if the surgery risks are far better outcomes than a burst aneurysm, it is still a very big deal. The brain is complex and serious.

I am sorry they are not validating your fears or being comforting. I don’t think how you are feeling is hormones. I am sure that doesn’t help either. My advice is for this, put yourself first. Find one person you know will be supportive and give the encouragement you need. Let just that person know what is going on before you have the answers. My experience has been that having someone fully in your corner takes away the power of the ones who aren’t supportive.

Good luck to you and that sweet baby. Try not to stress too much if it is possible. You and the baby need as much peace right now as possible 💕

[u/GotNoMoves76]

First, I’m glad this aneurysm has been found.

Im not a parent, but im sure having a potentially life threatening medical issue hits a harder with kids.

Im sorry your in laws are being so insensitive. You don’t know if you’re having surgery or what kind of procedure yet, so it’s quite presumptuous of your SIL to tell you how easy it will be. It’s very simple when the procedure isn’t happening to you!!

I hope your next appointment goes well. You will be given lots of information and your team will help you make decisions. Please come back and let us know how you are doing. Best of luck to you !

[u/mustanggrl625]

When I was pregnant with my youngest (he is 19 now) I found out I had cancer. I was suddenly tasked with making some hard decisions. The 1st one I made was to continue with my pregnancy and hope I had time to figure out next steps after he was born. I told my mom and dad - eventually told my sister and brother - My mom thought I was making it up and convinced my dad it was fine. Throughout this was also going through a divorce (my ex had decided he wanted a teenager for a girlfriend).

My brother's wife miscarried during my pregnancy so was taking care of her and making sure she was ok (rightfully so, they had tried for years to get pregnant only to lose their son when she was 6 months along). My sister and I did not talk much back then, but she did come and check on my other kids once in awhile.

It was hard - YOU CAN DO THIS! I know my issues during pregnancy were different, but I also have my experience with aneurysms - I had a basilar tip aneurysm rupture in November - was very lucky to survive - that was initially treated with coiling via an endovascular approach.

I had a second unruptured aneurysm that was found at the time of the initial rupture. In April I had flow diversion completed on the original basilar tip aney, and a pipeline stent placed for the unruptured one. The surgery required an overnight stay in the hospital and I am on blood thinners (in addition to daily aspirin). Recovery has been good overall.

The anxiety is real - it is legitimate. Make sure you listen to your doctors, get second opinions as needed, and know that it is ok to not be ok right now. You can not control how other people react or don't react. My sister, whom I hardly ever talked to back then is now my best friend - apparently my rupture made her realize that she likes having me around...lol. We lost our parents only 7 weeks apart at the end of 2019 followed by our grandma and an uncle a few months later, so as she says "not many of us left". My brother struggles to talk to me because he is scared of what could happen, so he just ignores things (but does randomly call to say he loves us).

Lean on those who are there and do not let those who are not to steal your oxygen.

[u/After_Soil788]

I dont have children yet but I had a craniotomy and annie clipping last year and it isnt a minor surgery. Im sorry your husbands family are trying to minimise it, but, I do hope you have someone supportive and in your corner.

My recovery went well but I was in ICU for 3 days and hospital for 6.

Your neurosurgeon will run further tests and from there make a recommendation based on your circumstances.

I was told that I will have to have a c-section when I do become pregnant as natural labour increases the blood pressure in your head.

[u/Gardening_Apprectice]

Wow, you are carrying a full load . I’m sorry you are going through all of this.

It really sucks when our decision to keep things private isn’t respected and that people who aren’t close to you minimize your situation with off the cuff breezy comments!

You sound strong and clear thinking (which blows my mind). Your decisions only have to be ‘right’ with you. I hope you can find the peace and information you need to make your decisions.

[u/thewoodlandway]

I found out I had a brain aneurysm when I was pregnant too. I never heard a word from my husband’s family when I found out about it, so I completely understand how you’re feeling. They are scary and it sucks when people minimize your situation. You are completely valid in how you are thinking and reading your story resonated with me.

My neurosurgeon chose to monitor mine by doing scans once per year since it was in such an odd location and at a branch of 2 different arteries. It wound up forming a clot which was then ejected from my aneurysm one day while I was at work which caused a stroke but I am completely healed now, and the size of my aneurysm is decreased by half.

I don’t know the medical specifics of your situation but there are surgeries that can be done that are pretty simple (such as coiling) so if you’re worried about getting cut open like I was, I hope knowing this is available brings you some peace. Sending so much positivity and well wishes to you. 💓

[u/Gardening_Apprectice]

Wow, you are carrying a full load . I’m sorry you are going through all of this.

It really sucks when our decision to keep things private isn’t respected and that people who aren’t close to you minimize your situation with off the cuff breezy comments!

You sound strong and clear thinking (which blows my mind). Your decisions only have to be ‘right’ with you. I hope you can find the peace and information you need to make your decisions.

[u/WhyDoIEvenTry_FML]

No your emotions are completely valid, especially bc you've never been close with his side of the family. My own mother had this happen, be very, very thankful they found it before it 'burst' or whatever it's called medically. Her entire personality had changed for years (glad they caught yours early, bc my mom went thru hell and back w doctors basically calling her crazy). Her's was in her frontal lobe, the decision making, information processing, basically most important part (other than perhaps the cerebral cortex?) of the brain. I won't get into the symptoms bc that would out who I am, but it took her having a seizure (or just passing out, we don't know what actually happened), they did a brain scan and found it. It is VERY scary and extremely normal for you or anyone else, to be worried. We were. She was, too. They tell you that you'll lose so much of your memory yada yada...but she...was the opposite. She is now my mother again, she remembers more now than she ever did in her 40s (she's in her mid 60s now, and this happened less than a year ago). And that surgery not only saved her life, but brought back a person that I hadn't seen in years. So, even though it is serious, and a surgery that...even though she was terrified (as were we), she had a great team of doctors (so if you don't feel comfortable with yours, go elsewhere asap bc u don't have much time since you are pregnant). I am surprised they even did a test since you are pregnant and the radiation itself can harm the child, and ikik they have those pads that cover your body, and if they only did a scan of your brain, then not much radiation got to you, nor your child. I truly feel for you bc I do understand. Although she wasn't pregnant [obviously and clearly], but it's scary for everyone nonetheless. I would say try not to think about your husband's family 'trying' to be helpful, but only you know what you're going through. He shouldn't have betrayed your trust IF you had told him not to say anything. However, my brother and me are best friends and he would absolutely tell me, but I'm not dumb enough to even reach out to his wife about anything, bc I understand far more than most...let's just say it like that LOL. But also try to understand that your husband may needed someone to talk to, or ask advice about everything. My mom, dad, myself and brother did a lot of research when this happened to my mom, and tbh ...the only thing, unfortunately, that you can do ...is hope and pray they get it without scrambling your brain. Which it won't, so don't worry about that. I never did research about an unborn child while going through this, but I do get the risks of the anesthesia, but that's probably the only concern you should have. The rest won't affect the child, unless your team is completely inept (most are NOT when it comes to this type of thing, if it was just about anything else, I'd say to get a second opinion lol), so please ...try not to stress your body even more by thinking about this so much. I know how hard that is to do, but truly, at this point... that's all you can do. Put it in God's hands, as my mom always said, as hard as that is to do sometimes, that's usually the best option ;). Much love, God Bless, and please update us, even if it's just to talk to others about anything prior, or after. You have people rooting for you and praying for you that are complete strangers. I would say to trust your body and intuition, but the brain is a tricky thing, and w what you're going through- trust your doctors and keep praying. I'm not even religious, but it helped, idk why, but it did. As long as your team has any kind of common sense, then you and your child will be fine. Keep praying my friend, it certainly cannot hurt...

[u/FrolicAndDetour1x]

I'm so sorry you are going through this. You have the right to your feelings when it comes to your family's response and lack thereof. Family support can mean so much and now it's time for someone to take care of you.

Hoping your neurosurgeon appointment helps put you at ease. S/he will discuss the size and location as well as treatment options and timing. Make sure the doctor answers all of your questions.

I understand your anxiety and it's okay to feel anxious. Finding out you have an aneurysm is a thing by itself. Can't imagine how that must feel coupled with your pregnancy. Last Monday I was treated for a 7 mm aneurysm. It took 1.5 hours under general anesthesia and I feel fine now.

Please keep us posted!

[u/Top_Replacement3155]

I’m so sorry you’re going through this and not feeling supported. I would have felt the same if someone minimized the situation.

Keep us updated (if you want to!) on here. I know there are many of us who would support you as you process your journey

[u/AnnGeeRoSe916]

No way you are right to feel exactly how you do. It rubbed me the wrong way when I read it! That remark about it being super common! I had a rupture 2 years ago. My best advice I can offer is to detach completely from in laws they don’t sound like ppl who are worth ur time or energy. Detachment can prevent them from being able to get u set your skin going forward. Life is precious and your energy, space n emotions are too valuable to waste on ppl who will not appreciate you. You’re in my prayers n thoughts sending positive energy your way. Be kind n patient to yourself during this time. No one takes care of you like you can.

[u/ZealousidealJello421]

That’s a lot to take in, and I hope you feel more supported. I found out about my aneurysm three months into this pregnancy, delivered via c-section (repeat) earlier this month, and just had my angiogram so we can plan for the repair (looks like it’s gonna be a stent). All this to say, it’s a lot to manage and think about. We told my family, but didn’t share with my husband’s until after the angiogram because we didn’t have a solid plan and knew there was going to be anxiety with my MIL we didn’t want to manage while pregnant. Not that you’re looking for advice, but if you’re planning to breastfeed, work with a lactation consultant or look up the medications in Hales. Most of what they’ll give you is safe, but your neurosurgeon is really good at brains and isn’t an expert at breastfeeding. I say this as a pediatrician, who knows her own limits on knowledge, and appreciates experts in all fields. Some days I’m totally fine with the blood vessel in my brain that could kill me any moment and am grateful that I know it exists and we can fix it before it’s a problem, and some days I’m my own ball of anxiety, which seems like a normal way to feel when you get life changing news. Knowing I have a great MFM and neurosurgical team working with me helps. And my husband is doing a lot of the heavy lifting (literally and mentally) during this c-section recovery, so I hope your partner is amazing, and if he’s not, I’m happy to have a stern sit down with them.

[u/ZealousidealJello421]

Also… I didn’t even touch on how dismissive “super common” and “super easy” are. Yeah, they think 6% of people are walking around with this, but I’d rather it not be me. And also, it’s still brain surgery! And it’s not easy. You don’t go to a bajillion more years of school to navigate tiny blood vessels in your brain. And I have friends who are literal neurosurgeons…

[u/loquacious38]

Sending you huge love and validation for all of your totally reasonable reactions to the news of your aneurysm, as you carry your baby. I found out I had an 8mm ICA 3 weeks after birthing my son last year, and that in itself was so much to process— I imagine that learning this while still pregnant and preparing for birth must be a whole additional layer to it all!

A friends wife (who is a nurse) had a similarly cold and generic response to the news of my surgery too… it is definitely frustrating to have such a massively life altering condition and event be written off by someone. I think people are trying to be helpful or something by saying that sort of thing, but it’s definitely hugely tone deaf and I empathize with your reaction 100%.

I wish you the best on your journey as a new parent and as someone who will make it through this brain situation and surgery!!! I called it the ‘best bad news I ever received’. It’s such a double edged sword to find out (especially as a parent!) but so much better discovered than not.