Crazy intrusive thoughts

Anyone else?

I can’t let my mind wander or it ends up here:

  • did that whiskey sour I had before I knew I was pregnant cause this?
  • only 6 weeks left of full vision
  • what if the worst happens and I’m a mom without a child next Mother’s Day?
  • etc.
    6 weeks now to craniotomy and my own brain has a maddening doomsday clock ticking away…

These are so tough for me to read

I am fairly spiritual now & you/your son are in my prayers for life(well, as long as my memory serves me)

99.9% it wasn’t your whiskey sour

Everything else, you/we are on our own - I truly truly hope & pray for your son


Thank you Mike. :pray:

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I think it’s fairly normal for a parent to be asking those questions. I know my mother did. In fact she (metaphorically) beat herself up about it and, to a point, probably still does. But as I told her ‘We can’t change the past’. Going over all of those ‘What if’ scenarios from the past is not going to help, in fact quite the opposite. And the same goes for all of the ‘what if’s’ now. All we can honestly do is go with the flow and try to look at things in a practical manner. I may make that sound easy, but we ALL know it’s not that simple.

Blame is destructive, and self blame can be the worst, we need to turn it around and make it constructive. What can you do to assist your son? And honestly all you can do is be his Mom. The rest of it is up to his medical team. And that is 100% out of your control.

Don’t be going to the ‘What if’s’, (Well, minimise it as much as possible) until you have some idea of the results post surgery and to put it bluntly that can be months (even years for some) after the surgery it self. The actual recovery from surgery can be a bit of a seasaw ie good days/bad days/good days/bad days… If you burn yourself out now going over those ‘what if’s’ you will be of very little use to your son when he may REALLY need your support, during recovery. Don’t be looking at it as a doomsday clock ticking away. That doomsday clock is already ticking, if that avm ruptures, that’s your ‘Zero hour’. The surgery is to stop the doomsday clock altogether. That’s the plan.

Like Mike, I highly doubt the whiskey sour was the cause, otherwise AVM’s would be much more prevalent than they are. Lots and lots of people drink before a pregnancy is confirmed.

I’m not going to tell you to calm down, this whole process can be one of the most stressful experiences known to man. But your son will be able to pick up on your stress and this will only add to his own. Be there for each other and that’s about the best thing you both can do, your journey’s are different but you are both on this journey and you will both be needing support along the way.

Merl from the Modsupport Team


Praying for you! I would have given anything to be the one going through all my son did and him be spared. Unfortunately, that’s not the way life is and beating ourselves up, worrying about all the what if’s will not change anything. As hard as it is, we moms are their biggest encourager and support. We have to be strong. I don’t know if you are a believer, but for me it was one day at a time, sometimes one hour or minute at a time, turning my worries into prayers to God and trusting God to be with my son as a great neuro team did their work. I pray now for you and your son!


Every time my son even mentions a slight headache, I can’t help but to cringe.

I been through a bit & seem to be doing well. But, I would take another one in a heart beat over my son having to go through it.

Just try to do your best - this is tough stuff, as tough as it gets at times

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Anyone else? Me.

Hi HMCaspar

It’s time we meet.

I think it wasn’t the whisky sour. It was the paint that we used after we had moved into our new home. That paint we used to make an old house to a perfect home for our future family. And I, pregnant with my son, put that paint that smelled badly on the walls. It could well be my fault. Isn’t it always the mothers who screw up?

Self blaming is stupid. Doesn’t help nobody. Still, I do it.

Last Sunday, the thought about having a "special” mother’s day crossed my mind too.

Our son is a bit older, 25 in July. 3 1/2 years ago he was diagnosed with a very large AVM Spetzler Martin Grade 4 after two epileptic seizures. Before that, we had no idea.

He had just finished his training to be a young professional and had gone for a two week holiday trip to Israel with his Dad. A few days later he would have entered the military service which is compulsory in our country (Switzerland) for every healthy young man. It turned out that he wasn’t as healthy as we had always thought.

The doctors in Zürich are great. They are our best cards in a difficult game. We are so lucky to live in a country with excellent health care. The doctors examined our son’s brain thoroughly and decided to leave the AVM be. They estimated the risk of a bleeding as very low, the risk of a treatment as rather high. The epilepsy was kept at bay with medication.

Our son’s AVM is big and complex, Spetzler Martin Grade 4, > 6 cm, in the right side of the brain. “Tricky to deal with”, that’s what our doctors called it.

Fast forward 3 1/2 years: What a bumpy journey lies behind us! When I have to explain our situation to outsiders I compare it to living in a earthquake zone. You never know when it hits, you never know how strong. You just have to hold on when the ground shakes. Then count the damage and start to rebuild… until the next one hits. Our son had several epileptic seizures. Every time when he went into cramping, we had to fear that he was having a bleeding of the AVM. So, we had to call the ambulance and control the overwhelming fear until he had the results of CT or MRI.

It has been almost impossible for our son to have the ordinary life of a young adult. So, he started his IT studies without trusting its success. He lost his driver’s license, his temporary jobs. He lost many of his friends who were just not ready to deal with the luring risk and what it did mentally to our son. And he lost his trust in life in general and in himself especially. I admire him, that he has never given up.

In March 2020, a week before the lockdown in our country, our son had a bleeding, against the predictions of the doctors. He was lucky that it stopped by itself and that it didn’t cause any severe damages. The doctors decided that treatment was the better option now. They started with a series of embolization, every two months. With covid 19 delays it took more time than planned.

So far, our son had 4 embolizations. They all went from okay to well. I felt like dying of fear every time when they shoved my son into surgery. And the waiting for THE call afterwards is beyond words. I know you know.

Now we are at a point of the treatment which I call doomsday: The doctors are planning on doing one more embolization to reduce the AVM and to minimize the risk of a bleeding during the craniotomy which will take place the next day.

They told us that their goal is to make the whole AVM disappear to prevent a regrowth or a bleeding of the remaining blood vessels. They want our son to be completely AVM free. But they prepared us that it will come at a cost; most probably there will be an impairment of the left arm and leg. Our son will need Rehab for at least 4 to six weeks. And this is if ALL goes well. If it doesn’t go well, I dare not think.

It’s up to our son now to decide when he is going for surgery. What a decision to make at 25! (How to deal with questions of letting our son become independent from us parents in these times of long lasting crisis is a topic for another time we meet.)

So, that’s where we are now. Yesterday our son had another epileptic seizure. It’s always the Grand Mal that he has. So, full program with the cramping, falling, stopping to breathe, turning blue. Very scary, even if we know the script by now. We rushed once again to the hospital. He is fine once more. And I’m so relieved again. Living in the earthquake zone.

For today, our son had promised to tell us his preferred date of surgery. We will see. I hope it will be as soon as possible, in June. Let’s get it over with.

I work as a teacher. I quit my job after the last meeting with the doctors. I want to focus on supporting my son and surviving my own rollercoaster of emotions along the way. Again, I know that you know.

So, this has been a long introduction. I hope you are happy to meet me. I sure am happy to read your posts here. It’s rare to meet someone who seems to get how it is. Really get it. No even my closest friends really get it.

I will not let my writing run through the correction program as I usually do. I don’t find it as important anymore to make a good impression. No use and time for keeping up the facade. That’s something I’ve learnt with the earthquakes. My native language is German. So please overlook my mistakes.

I wish you and your family all the best. May the doctors find just the right treatment to cure your son. May he be lucky to turn out fine after all these unspeakable challenges in his young life. I wish you the strength of all mothers. We are strong for our children from their first breath to whatever end.

Love Conny


Oh my, yes, Conny.

Our journeys have remarkable similarities, including all the positives I know both our sons have going for them. I have to constantly remind myself that it really could be worse…even if this acknowledgement doesn’t at all make our situation better.

Now for me, it’s got to be the whiskey sour because all the painting and bathroom re-tiling I did while pregnant was with a Darth Vader-looking respirator mask fully attached. :wink: That’s sort of a joke… I’m sure you also know that feeling when your intellect isn’t as strong as your desire to have some reason to attach the AVM to.

Ugh. I can’t imagine how torturous your last 3 1/2 years have been! And his seizures make our migraines seem like child’s play. Not to mention we’ve only been living with the knowledge of an AVM since December. How lucky it was discovered before your son entered his time of military service! Can you imagine? Of course you can…it can literally take my breath away when I remember my son could have had a big bleed any time in his childhood and we were completely clueless about the danger.

We met with the neurosurgeon last week for the run-down of the final procedure, what to expect, etc. she spent an hour with us and answered every question with amazing clarity and empathy. And confidence about tackling this “monster” (her word) AVM. It’s 5.5cm and also a grade 4. His 4 embolizations got all the reachable feeders, but she said it’s likely he’ll still lose enough blood to require a transfusion. Still, some in this group have inoperable AVMs. I’m glad that removal is a clear option, and that we have access to such good care.

This is scary stuff and I’m sorry you’re also feeling it but this group really is game changing for me to understand I’m not alone. I am happy to meet you. These things are rare, but not so rare that we didn’t find each other.

For no reasons that matter, I wonder about the difference our sons feel in this process due to their 10 year age difference. It’s probably minor, at least regarding important things. And I know you and I both have that awful nagging fear in the back of our heads about the craniotomy. I can’t imagine how many lifetimes that 8-10 hours in surgery will feel like.

It made me so sad for both you and your boy to read about his struggle and losing his trust in life. As you said, I dare not think about what if my son’s surgery doesn’t go as planned. And for your son, I hope the AVM removal puts an end to your seizure roller coaster.

Two months ago we had to talk with our son about advanced directives and end-of-life decisions. But right now I’m listening to him play video games with his friends online. He’s laughing and being exactly as silly as a 15-year-old should be. I cling to these moments because I can’t help it and because I need to.

Please keep me posted regarding your son’s decision. Thank you for sharing your strength with me. I want to do the same for you.

:heartpulse: Heather

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Thank you, everyone. My original post was shared during a moment of particular weakness in this crazy process. How amazing it is to have responses and support from people who really understand!


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It’s what we are here for. These stories inspire me every day. Really. It doesn’t matter how you start them. The important thing has been sharing and have someone share back.

You’re doing great!

Very best wishes,



Heather, Heather, Heather, that was NOT a sign of weakness AT ALL, it’s a sign of self awareness.
Saying ‘Hey I need some information about this. I need some help’ that’s never a weakness.
(Luckily) This is not a journey everybody has to endure, so who would know the journey?
People who had been there, and that’s us. The medico’s can give you all of (what I call) ‘The Book theory’.
Our’s is a lived experience and no book can give you that.

You’ve come to the right place.

Merl from the Modsupport Team

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I don’t see anything mentioned on here by anyone as “signs of weakness”

An AVM is nothing to shake a stick at - at all

This crap is our brain & in many cases, lays dormant like a time bomb - until

This shit made me cry, I haven’t cried when my last 2 closest friends passed - now, this < I don’t even see that as a sign of weakness.

Weakness my ass, I still have random sensations in the area - weakness :roll_eyes:

More like, finding strength you never knew you had - and, again - this is nothing. I’ll take another hemorrhage any day, before my son having one of these shit piles in his head