AVM aftermath

[BG1991]

anyone here an AVM survivor? I’d love to hear your story 🥰

[cat3]

welcome BG 😐...

As mentioned in your bio, you certainly are 'smashing' your parenting duties. A haemorrhage during pregnancy plus craniotomy and all that entails, followed by nigh-on five years of caring for three boys ; you're Wonder-woman of sorts !

You know what an amazing feat you're accomplishing but I get how the achievement isn't celebrated much amidst the loss of one's 'old' self & abilities.

I had a Subarachnoid haemorrhage11 years ago. However, my bleed was more accessible and was coiled, so nowhere near as complicated as your procedures. I came home after 3 months with support from partner and regular visits from adult son & daughter.

No way would I have coped with three young children 😵 !

I've been coming here ever since and found this to be my 'safe' place ; one where people really get the after-effects, issues and 'strangeness' of living with brain injury. Life isn't the same, for sure, but with time we develop our personal strategies and short cuts to a decent quality of life - with even laughter & joy here & there.. Looks like you're doing an amazing job m'love.

Brain injury can be lonely, even in the kindest of company ; keep looking in and posting BG .....when you have time !

Cat x

[BG1991 in reply to cat3]

hi cat, I’ve also just read your bio and I sympathise greatly. It’s such a bizarre situation, at the time it’s our poor families that suffer the most but in the aftermath it’s us that start to feel.

Thank you for your kind words.

It’s no doubt a daily struggle even after nearly five years has passed, but it’s my children that have got me through some of the most hardest days. I will continue to check in seems like a wonderful platform for people to feel less isolated.

Take care

Becky 🥰

[Wez0161]

hi I’ve had a avm taken out from my brein

[BG1991 in reply to Wez0161]

I also had mine removed, how are you finding the recovery process? 😊

[Wez0161 in reply to BG1991]

Hi sorry it replied sooner heads all up ver the place jumping from thing to another I’m always tired but very eractic and down a lot but not seem to care aboat much

[Prettythings1]

HelloU am an AVM survivor and parentI can relate to everything in your bioI had a massive brain haemorrhage nearly 20 years ago. It paralysed my left side rendering me without the use of my left armAnd significant mobility problems. I had to take a year off from university to recover, however I never regained the use in my arm and I still have mobility problems.Never the less I went on to meet my husband and have our two beautiful children. This can be a challenge as we don’t have help from family etc but thank goodness for school and nusery.One handed nappy changing is a challenge but it can be done.The fatigue is hard to manage especially with keeping on top of the housework and cleaning.  I find doing the school run twice a day, Incredibly exhausting. Snd then the battle with homework after school then bed times  are a delight also.You sound like you have  done amazingly you should be so proud.Send me a message. If you want to chat 

[Oppo24]

hello, AVM survivor here too. Diagnosed after years of dreadful migraines it was finally removed 23 years ago. My 2 boys were young men by then so I didn’t have to deal with the issues you are facing but it was still hard to carry on working and care for my husband. My AVM was on the left side of my brain on the temporal lobe so it mainly affected memory and learning but I went on to do a Masters degree almost in defiance. I’ve learned over many years to deal with it but it takes time - the most difficult thing I found was learning to accept that you are no longer the person you used to be. in some ways I appreciate the person I am now but but I still miss the old me. It just takes time. Stay strong

[BG1991 in reply to Oppo24]

I’ve been out of work since, and it’s driving me crazy! But at the same time I still don’t feel like I have it in me, it’s like fighting a loosing battle with myself daily. I’ve tried some online free courses but nothing registers nothing stays my memory is probably the worst effected. I was a healthcare worker previously. But the same as you I wake up tired and have chronic fatigue daily. I’m still in the grieving process I think and it’s been nearly 5 years. Im determined and I’m sure this will pass one day, but in the mean time I have to just remind myself to be kind and grateful. X

[Oppo24 in reply to BG1991]

yes I can relate to those feelings. I could no longer do the stressful and highly pressurised job I’d had, so instead went freelance working from home so I could at least make some decisions about what I did. Took a hit on pay but decided it was worth it and I’m still freelance now, albeit semi retired due little work around since pandemic. Memory is indeed the biggest issue - I’ve had to devise methods to help me and to constantly write things down, leave notes, set reminders, etc. 5 years is not very long so do give yourself time - it has only probably been in the last 5 years that I have really come to terms and accepted it! It doesn’t pass as such but you adapt and learn how to manage it and accept the new you. Being kind to yourself is key - remember it isn’t your fault, this is something that happened and it could have been much worse! X

[Jersegirl78]

Hi there? I am new here, and wondering whether your abbreviation was meaning from an assault?? Hopefully not! But if so? That was my cause, but understand everyone has a different story to tell. 🙏

[BG1991 in reply to Jersegirl78]

hey jersegirl, no it doesn’t. The abbreviation stands for Arteriovenous malformation, I’m so sorry you’ve experienced such a horror. If you’d like to chat I’m here if you’d like to 😊

[lcd8]

Hi BG1991. I have an AVM that is untreated. I am not currently seeking treatment on the grounds of severe risk.

[APAscot]

I was diagnosed with an AVM in the mid 80s. It was confirmed in 2006 and I was informed I had epilepsy. I had my first seizure in 2009 without any after effects. Was on Lamotrigine and Keppra but in 2016 I had multiple seizures ending in status epilepticus and hospitalised as they thought I’d had a stroke as it left me paralysed down my left side (AVM on right side). My AVM had spontaneously thrombosed. Fortunately the paralysis was fairly short lived but was pretty scary. Was put on phenytoin as well as my other two epilepsy drugs. Very soon after I was diagnosed with a DVT in my leg followed by clots in my lung. Turns out I have multiple blood clotting conditions so am now on warfarin permanently. My AVM is too large to operate, zap or anything else, so I’m very pleased (which probably sounds crazy to other people but the thought of an operation terrified me). I now have regular scans and seem to be under control.

[Butterfly860]

I am … stroke from unknown brain AVM while 8 mths pregnant w my twin boys. I was 35 (am 50 now). Turned my life upside down. Fighting A TON of invisible disabilities still: MDD, AGD, PTSD, cPTSD … and partially paralyzed on left side (foot and ankle). Had complete left side paralysis then … Lots of falls throughout the years, epilepsy (now thankfully controlled w meds, and hopefully now on an upward curve of recovery w a new drug, Auvelity. Early days but let’s keep hopeful, thankful and full of grace … praying 🙏