New here, seeking info on AVM’s while pregnant

Hi all! I’ve been diagnosed with an AVM for a while but only recently found this site. I want to share my story in the hope that I might be able to find others who have had a similar experience, & to get advice about possible treatment options.

In 2002, aged 23, I was nearly 5 months pregnant with my only child. I awoke one night to severe head pain & projectile vomiting. I immediately rang my midwife, who said I probably had pregnancy migraines & to take OTC pain relief. I now know that was my first bleed, & miraculously didn’t have any permanent injuries or death. I can’t believe it looking back, but I actually went to work in the morning despite being in terrible pain. Through completely unrelated circumstances, I ended up moving & changing midwives, & this probably saved my life.

Fast forward six weeks & I was at my parent’s house. I got up to go to the kitchen & everything went blinding white. The pain was even worse than the previous time & I again began to vomit. My mother rang my new midwife who said to get to a hospital straight away & she would meet us there; which she did.

She demanded that I have a CAT scan immediately, which showed a large bleed. I was admitted to the stroke ward until my daughter was developed enough to be delivered by caesarean under general anaesthetic.

After her birth, I suffered from postnatal psychosis, having severe paranoid delusions about people trying to harm or kidnap my baby. Because I wasn’t awake for her birth I also sometimes thought I had been given the wrong baby.

I was young, scared, traumatised & struggling to bond with my daughter, due to the circumstances of her birth but thought if I told anyone what I was thinking & feeling, they would take her off me, creating a hopeless spiral.

So I told my doctor I had postnatal depression & was prescribed Prozac. This sparked a manic episode that lasted over a year & eventually led to being diagnosed with bipolar disorder; & the start of numerous medication trials to control my symptoms. Bipolar disorder was like a wrecking ball that completely turned my life upside down.

In the midst of all this, my mania made my mood upswing. Initially everyone, including myself mistook this for me coping very well. I had an angiogram that showed the AVM was nearly 4cm in size, located in between the right & left hemispheres of my brain, about half way down.

The neurologist described typical treatments but said all would be unsuitable, due to it’s location. He said I wouldn’t be able to have anymore children & that it would be better just to monitor it, & then I never heard back from anyone ever again.

I have suffered through numerous medication trials to get me bipolar disorder under control. Bipolar has intrinsically changed me & caused me to do a things that I’m deeply ashamed of, & were completely against my personality & beliefs pre-AVM.

I resent how my life has changed since the AVM bleeds but have learned how to cope & live with bipolar disorder. With medication, I mostly have depressive & anxious episodes.

Has anyone else here been diagnosed with a mood disorder or had marked personality changes post AVM bleed? Or while pregnant? If so, what has been the outcome? Also where are some good resources to find a reputable second opinion? I live in New Zealand if that helps. Sorry for all the questions, I’ve just never known anyone else who has been through this. It’s been so amazing to read all your stories; I don’t feel so alone now. Thanks for taking the time to read this.

Hey Dee,
Firstly, please do not be apologising for asking questions. I can assure you we all have questions on this journey. Some people, especially the dr’s, make out they know it all. They don’t. We are still learning about the brain and its intricacies, so the idea that they ‘know it all’ is arrogance at it’s pinnacle. Nobody knows it all. It’s only by sharing our experiences that we find we are not the only ones to travel this route and although many of those experiences may not be exactly the same, there are many parallels.

As we know the brain is a very sensitive piece of equipment, small changes can have a massive impact, some changes can be very easily dismissed or misdiagnosed by the medicos. Often it is not until there is progression of symptoms that things are investigated further and a true/more refined diagnosis is given.

I too am a Kiwi, now living in Australia and I have lost count of the number of differing diagnosis I received over the years. Many of which were psych in nature. It is my belief that, in my case, the psych diagnosis’ were very much a case of ‘Well, we can’t find anything physically wrong, so it must be psych…’ The emotional impact of the psych diagnosis was MASSIVE. I was 2nd guessing myself at every turn, I was having all sorts of weird occurrences/sensations/thoughts. After being given the psych diagnosis, it didn’t matter what was occurring, everything was labelled psych. I learnt to shut up and not say anything for fear of simply being told ‘He’s crazy in da coconut’. That was until I had a major incident, only then was a more thorough investigation undertaken. Turns out I wasn’t ‘crazy in da coconut’ and that there was a physical cause. I was so angry with the dr’s who had labelled me with the psych diagnosis. If only they had investigated further in the initial stages rather than take the easy way out by saying ‘psych’, things may (or may not) have been identified and managed appropriately way sooner.

Over the years I have been trialled on all sorts of treatments and meds, with some of the side effects being nothing short of devastatingly awful, even making the whole situation worse. Each dr had their own opinion and discredited any other dr’s view. Many were conflicting views and the treatments only added to my symptoms. I couldn’t find a ‘normal’ level. I had an incident whilst driving and was sent for a scan. The dr came out with the line "Ohh, look what we found…’ like it was all new. I’d been telling them for years that there was something not right. I was sent to a neurologist, his view was ‘Wait and watch’. I’d been waiting for years already and if the neurologist had had my symptoms the last thing he’d want to hear is ‘Wait’, so I got a referral to a neurosurgeon for a 2nd opinion. This was the best thing I could have done.

Neurologists work on theory and although they are very knowledgeable, they are not surgeons. Neurosurgeons work on the physical brain itself and have a more complete knowledge about brain structures and what is surgically possible.

The neurosurgeon was flabbergasted that I’d been told to wait considering my symptoms and within 4weeks I was in having surgery. Now I must say here surgery was no quick and easy fix, in fact, far from it, but I now have a physical diagnosis and this has helped my overactive mind from taking me to some of those ‘worst case scenarios’ and that hole known as ‘self blame’. We don’t choose to be here, but here we are.

As for you obtaining a reputable second opinion, you are relatively close to Auckland and there are a few neurosurgeons in Auckland that you may be able to get a referral to see. I say ‘Auckland’ because although there maybe neurosurgeons closer the resources in regional areas are naturally limited. For more complex situations, such as your own, a broader range of expertise maybe required, even consultation with multiple specialisations so that the whole situation can be taken into consideration.

I do hope that this helps and please know that we are here if you need to chat or just bounce ideas off of others who have ‘Been there, done that’, so don’t be a stranger.

Merl from the Moderator Support Team

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Thanks so much for your reply, I really appreciate it. I actually live in Auckland so will do some research & try & find someone for a second opinion. I would like to not have to be on mood stabilisers for the rest of my life. It’s taking a toll on my body & self esteem (gained over 30kgs!) & am constantly fatigued by medication side effects. Again, thanks very much :blush:

Ohh, it truly can take a heavy toll. Any medication, overtime, is going to take a toll and psych meds can be nasty. You have an underlying neurological condition, mind altering meds may manage the behaviours but the physical neurological condition may be contributing. That condition needs to be managed first or those contributing factors may never be relieved, even with a chemical cocktail.

Merl from the Moderator Support Team

Hi Dee, Firstly welcome to the family and hope your doing well… I am in Australia so I’m sure we have a few of our Kiwi friends here that may assist with your request for a second opinion or you could come out here as there are a few Australian members also.

I’m sorry to hear about your story and as someone who has suffered from anxiety & depression issues for many years I can definitely sympathise with your situation… I was told the location of my AVM did affect my moods and emotions as I do tend to get short sometimes etc etc… I know it’s hard but we have to take on the positives and be grateful for what we have as there are many in much worse positions than us… God bless!