Effects after AVM/How to Deal

General
1

Hey guys,

My name’s Hannah. I had my AVM burst almost 2 years ago. It’s left me with cognitive issues (takes me longer to do school work, takes me longer to process, etc…), I can’t see on my right side, I have a different sensation on my right side, and I have double vision so I have glasses to help.

Thankfully I’ve had friends and family to support me and help me through this whole process, but just going through this whole thing with my deficits and not knowing anyone else who’s had an AVM, it gets lonely and no one understands what I’m going through. All my friends are now at college and I’m at college, so I just feel like I can’t talk to anyone about this because no one understands. And obviously when a big event (like an AVM rupture) happens in your life, your life can never go back to what it used to.

I was just wondering what your guys’ experiences were after having your AVM, and how you dealt with it. I also was wondering if anyone my age has experienced it. I haven’t heard of ANYONE that’s been my age that had an AVM rupture. I was 17 when it occurred, and I’m 19 now. I just really am wanting to know if there’s anyone that’s that age because I’d love to have a discussion with you about it because I kind of feel alone and in the dark because no one my age can relate to what I’m feeling and going through.

Like everyone knows, AVMs occurs in around less than 1 percent of the general population, so not a whole lot of people have to go through what we go through.

Thanks guys for reading, and I hope you can comment- any advice or even background from your own personal stories is most welcomed.

2

Hey Hannah,
One thing I have learnt on my neurological journey is that no 2 stories are exactly the same. 2 individuals can have exactly the same injury/incident but have vastly differing effects and trying to draw exact parallels is, IMO, impossible.
I say this from 2 different perspectives:

  1. In my ‘former life’ I was a disability support worker. My role was as a living skills teacher, teaching people with disabilities how to live independently. This involved learning how a persons disability affected them, then adapting a program for them to be able to learn skills within their abilities. A large part of my role was assessment of my clients abilities. From this role I found a vast number of variables from the location of the AVM, if it had burst; where it had bled from (and where it had bled to) the length of time it had bled for and whether or not any treatment had been given. These facts can all have a massive impact on any outcome.
    2)I have had my own neurological incidents (not an AVM) that have required numerous neurosurgeries, 6 so far, and no two of my own incidents has resulted in the same outcome. Each operation has ‘disturbed’ brain tissue (as if I wasn’t disturbed enough before lol ) and has caused a whole range of varying symptoms.

I was 24yr old when this all started and after the initial surgery I thought it would be like any other operation, give it a few weeks to recover and I’d bounce back to where I was before. Well, that couldn’t be further from reality. It took me many months to recover and even then, nowhere near back to where I was before, but I adapted and recovered to an acceptable point. Then I needed further surgery and this knocked my BIGTIME. I fought to get back to normal, I pushed myself too hard, too soon and did myself more harm than good, ending up with even more neurosurgeries.

I can completely understand where you are coming from when you say '…it gets lonely…" Others do try to understand, but in all honesty, only those who have been here can EVER fully comprehend. Life moves on for those ‘others’, but for us it doesn’t. So, now what??? I have needed to have a complete change in my whole view of life as I knew it. I no longer have my former employment, which gave me a focus. I no longer have the friends I once had. So it hasn’t been a single thing that has changed, it has been EVERYTHING that has changed. Some people say “Change isn’t easy…” but this has been a catastrophic change. I will say that I have been very lucky to have a very supportive wife who has stuck by my side (I often wonder why. She could do much better than me). I honestly believe that without her, I’d be dead.

I do hope that others here will contribute because there are many who have been in your situation. Anybody who tells you this is easy has never been here.
Please just know that you are not alone in all of this and if you want people who truly do know, come talk to us, because we know from personal experience.

Merl from the Moderator support Team

3

Hey Hannah!
I was 15 years old when my AVM occurred so I can relate in so many ways. I also had congnitive issue actual had to relearn reading and writing all over again. I am now 33 and have seen tons of improvements over the years. It was tough and hard work going to speech for 4 years (at school and away from school) and taking tests alone with extended time on tests, which i hated at the time but learned that I deserved that time to show them what I got :slight_smile: Word retrieval is the hardest for me and I taught myself to get around those struggles. Today very few even notice my cognitive struggles and I still continue to push myself in places i get anxious in like writing… I also have a blind spot on my right upper quad but that didnt effect me as much other than hitting my head on stuff. I know it is a lonely place sometimes and if you ever need to talk just let me know, I am always a phone call of skype click away. I ,like you, also had great friends and family but felt like no one understood my experience and I never got to talk with someone close to my age that had the same experience. Keep pushing through it and dont be hard on yourself when it takes you longer (thats what i needed to hear back then at least).

4

Hi Hannah,

Sorry for a very late response to this post. We seem to have a fair few things in common!

I was diagnosed at the age 22 after deteriorating over the few years preceding diagnosis. I had a large AVM deeply nestled in my left occipital lobe, it was highly aggressive causing brain damage (and vision loss in my lower right side in both eyes). This explained my deterioration and the visual episodes which turned out to be occipital seizures.

I couldn’t complete my fourth year of university and during my fourth year I felt more and more depressed and alone not knowing what was wrong with me. Whilst my friends were all getting on well with their studies, going for nights out and work outs - all I wanted to do was sleep and I struggled to concentrate feeling like a failure.

Once I dropped out of uni in April 2017 I was then diagnosed in May 2017 and returned back home to London from uni in the North of England. Returning home was difficult after enjoying my independence, seeing photos of all my friends graduating also was tough. I began to feel more and more alone and depressed having very few friends in my home town. Migraines were daily which also didn’t help me cope.

In late Jan 2018 I had a complex embolisation to treat my AVM. I had a stroke during the operation causing it to take 7.5 hours. The stroke has resulted in me having lost the majority of my right had side visual field in both eyes. I also have other deficits: short term memory problems, poor energy levels needing more sleep and naps, slower processing time, poor co-ordinaion and concentration is difficult. A result of the operation lasting longer caused me to have over-radiation which resulted in me losing half of my long thick hair; literally half bald.

During this process my relationship with my boyfriend fell apart, he wasn’t understanding or compassionate and I had to break up with him a month before my operation. Many friends also let me down.

7 months since my operation things have changed alot for me. I had already completed both a course of CBT sessions to help me cope with my condition and now finished counselling sessions to help me with my personal issues. I have learnt how to manage my energy levels better making an effort to go out and see friends regularly and rest when I need to. My vision is still not easy but I’ve adapted well and learnt to be alot more cautious.

I have learnt not to feel shame about my deficits, the delay in my education/career caused by my AVM and to be open whilst being light hearted about my condition. I prioritise my health and happiness and distance myself from people or situations that aren’t healthy for me. It may sound awful and heartless but I’ve learnt almost everyone in life is replicable, if they damage you then they gotta go and you will find new people who treat you right. It has been difficult being patient and loving to myself but I finally do really love myself.

I have new friends with AVM’s and have reconnected with old friends and made new ones too over this period of time. You are right at this age it is difficult relating to our peers. After going through a major life event your perceptions change and you mature beyond your age. Friends struggle to understand our challenges and their worries/challenges seem relatively trivial compared to ours so it causes a disconnect.

I believe although there has been delay that there are many routes to the same destination. Sometimes life throws you some curveballs causing your route to be longer and more difficult but if you keep going you will still reach the goal you started moving towards. I can still get everything I wanted out of life before the brain damage and becoming a changed “me”.

CBT has also helped me follow the motto I live by “don’t worry until there is something that happens to worry about”. I always think first “is this worry 100% going to happen or just a maybe scenario? Do I have any control over this thing I’m worried about?”.

I will soon receive my degree certification and have a graduate job waiting for me with a company who knows all about my AVM and deficits. I still have more treatment to go for my AVM to be fully obliterated but for now I just focus on the present!

Happy to PM and exchange contact details if you would like to talk further. You are definently defiantly not alone!

Lots of love,

Corrine

1 Like