To introduce myself to all. I am Nick and would like to know if anyone on this forum can shed some light on the below short background story… Or know of anyone i could consult to discuss this topic further who has some similar experiences.
My daughter (17 at the time) during exercising got a seizure / stroke of sorts (we did not know what is was at that stage, but panic set in … ). We called the local emergency number and the ambulance was there within minutes (thank goodness). She was rushed to the hospital and after examination, MRI and CAT scan it was straight to surgery to remove the AMV that had ruptured/bleed out causing the stroke/seizure. I will not bore you all with the lengthy process of recovery she had to go thru ( but it was lengthy and is still ongoing… not the physical as much as other… i will explain). So her right side was effected due to the AMV rupture / bleed out was on the right hand side above the ear.
Anyway, after one full year of rehabilitation she has been home from almost 10 months now and have challenges. After the surgery it has affected here sensory signals hugely …
She is super sensitive to light, to noise which drains here completely. The best way to describe this is “brain flooding”. She cannot filter out anything… and she tires VERY easily and then has to rest. This has affected her social ability as she cannot handle several conversations / room noise / music etc…going to the shops is a challenge - noise, lights, people etc. Even going for a walk with cars and motorbikes etc drain her. She cannot watch TV for lengthy periods as this drains her as well. All has to be taken in small chunks. But on top of all of this, she is a 18 year old teenager and you can just imagine what this is like for her… i am sure those with teenagers as children will know… or just think back to your teenage life from 18 onwards… this for her is all but lost.
This is just the tip of the iceberg, but it is a start to get some good conversation going or feedback.
And yes we are very lucky to have support from the local municipality with regards to Support person, Physios, therapists etc… but even after almost 10 months the progress has been VERY slow and really shows no sign of getting much better anytime soon.
Whew… hope this was not too long a post…
Thanks for reading
Nick (VissII)
Hey Nick,
Sorry to hear of your daughters situation.
My personal situation is a little different as I do not have an AVM, but another neuro condition which has required a few neurosurgeries and all of my senses have gone haywire in some regard post surgery/ies. Initially, OMG, light, noise, smell, touch, everything was amplified 10 fold. It was like my clothing hurt, my skin felt like I’d been burnt, the sensitivity was extreme. My wife loves to cook and I’d try anything but the smells I found odd, almost revolting post surgery. And the tastes???
Eventually, these settled, but the 2 senses which haven’t settled for me is the light and noise. My last major neurosurgery was back in '13 and bright light or flashing light, like sunlight through trees, still affects me today. I have installed special shutters to block ALL light on my house, so I can regulate the light in my environment. I’ve also had MAJOR issues with regulating my body temp and the shutters also help keep the heat out, so that’s been a bonus. But I still use refrigerated air conditioning to keep the temperatures tolerable. Too hot or too cold and my symptoms explode.
Noise or sound or hearing is also an issue. Firstly it was like I was underwater, the sound was coming at me in waves. And walking only amplified that whooshing sound with each step, it was very disorientating and my balance was AWFUL (And sometimes still is). I go to stand, I get dizzy and if I don’t brace myself with a wall or furniture I can find myself in a pile on the floor. I’ve had all sorts of tests and examinations, there’s nothing wrong with my hearing.
This may sound rude, it is not my intent, but here goes:-
Your daughter has had a major brain injury and at 10 months, in neurological terms, that’s still early days. Some things may return relatively unaffected, but by the same accord, somethings may never return. There is no set gauge, there is no set time limits. Brain injuries are nothing like any other bodily injury. Tendons, bones, muscles all heal fairly quickly, like weeks. But brain injuries can take years and it’s never a straight line of progression either. I often explain it like this
“Some days I could leap a tall building in a single bound (OK, bit of an exaggeration)
But then…
Some days I’m lucky if I can even crawl out of bed.
I simply never know what today will throw at me. I just have to be prepared for the day”
This journey is not easy for anyone involved, none of us choose to be here, but here we are. We just have to learn how best to manage and that is NOT easy. We know this because we live it too.
So come talk to us, lots of knowledgeable people around here with a lived experience.
Merl from the Modsupport Team
Very very sorry to hear that she had to go through this - but, completely agreed with the above from MS. She had to undergo an extremely difficult operation - a cranial resection. Give her time, she needs to do the same.
I “just” had an embolization to fix my AVM that also caused a rupture - at ten months I was still not quite “normal”
Craniotomies scare the daylights out of me & that’s what she’s going through. Give it time, the smallest progress is still progress.
GL to her & you as well! God Bless 
Thanks very much for the feedback and sharing your challenges with me. And no you were not rude at all. I will say just to clarify that it has been 1 year and 8 months… not just 10 months… it happened April 2020… She was in rehabilitation for 12 months under supervised care to work mainly on her physical rehabilitation (She had to learn how to walk again, talk properly, use here left arm and hand, her left side of her face and left eye etc… )… They also worked on the softer issues as well… so the 10 months is her time at home…
Regards
Nick
had/ have the same thing; 6 years later I still get brain flooding but have learned to cope with it a bit.
I still cannot handle multiple conversations in a noisy environment and loud, sharp noises feel like a slap in the head. I carry ear plugs that reduce the high pitch noises when I am in public places like restaurants but at times I need to walk away and find a quiet space to let my head reset.
best of luck to your daughter as it will take time to adjust and find her tolerable situations.
Hi Nick,
I’m so sorry this happened to your daughter. I suffered a stroke in June of 2021, and I’m 18, just like your daughter.
I’ve been experiencing a lot of the symptoms your daughter has. I have what are supposedly called, “floaters”, and they get in the way of my vision when I’m in bright lights or the room is all one color, it’s especially bad with the snow. I understand not wanting to go shopping, the people, the noise, the lights, it’s all overwhelming.
Just so your daughter knows, she’s not alone.
Hi Nick, Sorry to hear about your daughter & as a father and someone who has lived through being 18 I can understand how extremely stressful and difficult this would be for her and you guys… I would really suggest speaking with her doctors and advising of her situation and what could be done, surely this isn’t a first and they could guide you in the right direction.
I know it’s been slow progress but if there is progress that is what I would focus on… I suffered a bleed & had my AVM removed in 2011 & still today not 100% but much better… everyone is different and her circumstances suck but she is here with us at the end of the day.
Please try to focus on the positive side of things where you can & please seek advice from her doctors to help you guys… just know you are not alone… God bless!
Sorry about that, if I misread
Personally, I truly hope she recovers well - I was somehow very fortunate to go this long before mine ruptured
Hearing about the younger folks on here really hits a different note for me
Hi VissII
I’m sory to hear about your daughter condition. She’s a fighter, I can tell. As you said, she had to learn how to walk again, talk properly, use her left arm, etc… This is A LOT. Recovery after a brain surgery is different for everybody and cannot be compared to recoveries after body injuries. The brain has its own way to work and is still a mystery for experts. Progress is still possible years after surgery.
Give your daughter TIME to heal. She also needs to give her body time to heal. It’s hard to hear, but she/you need to be patient.
As Merl said, progress IS slow and NON LINEAR, but it IS still progress.
Hang in there, it’s tough and discouraging sometimes, but keep going!
To all the replies and GREAT support. I can only thank you for sharing and supporting. It has taken a huge weight off my mind.
Thank you…
Hello Nick
It’s hard to find the right words. I’m sorry to hear of your daughter’s difficulties. It’s heartbreaking. I wish her all the best; courage and patience. I believe in the neverending plasticity of the brain. Your daughter will make progress. Even if they seem like very small improvements, they are huge achievements.
Our son is 25. He was diagnosed with a big AVM four years ago. We found out after two Grand Mal seizures that hit him out of the blue. So, he was 21 when his life changed drastically. It was very difficult for the entire family, we all had to adjust. Our son had just finished his education/professional training and was waiting to join military service which is compulsory in our country (Switzerland). After that, he had planned on travelling for a few months before picking up his studies.
Within two weeks he was officially declared unfit for almost everything that he had planned out for himself. Still under shock of the diagonsis, he had to find a new job. Not an easy task! Because of his epilepsy he lost his driver’s licence and he was not allowed to do certain activitiies that used to be part of his profession. The doctors had recommended to leave the AVM be because they estimated the risk of a bleeding as low, the risk of any treatment as relatively high. After two years of living in fear for the worst and after several scary seizures, the AVM bled. Our son was very very lucky that it didn’t cause any severe problems. He was fine after a few weeks. The doctors recommended treatment, and so our son underwent four steps of embolisation in 1 1/2 years and another embolisation and craniotomy in August 2021. He is AVM free now, he is still healing, and he is still getting tired easily. He is on anti-seizure meds and he still has to process a lot mentally. He feels that he has been outstripped by all his friends, and that life in general is not a very trustworthy thing. Over all, he is fine though. To us, his parents, it’s a miracle. In his unfortunate situation, our son was very lucky. We are very grateful. Our good outcome makes me feel so bad for any other young people and their families who are still confronted with the difficulties caused by AVMs. It’s such an ordeal.
Dear Nick, by telling you about our son’s experiences, I hope you can understand how much I can relate to you being a parent of a young adult who is slowed down by this nasty diagnosis. How many times had I wished that it was me who had the AVM instead of my son! When you’re 18 you should have the privilege of being carefree, having the whole world set at your feet.
For a long time we didn’t know how our son would turn out after the treatment. I had promised myself, that - no matter what - I would always focus on that what he CAN do. “Look out for the good and appreciate it! It makes it easier to deal with the bad.” That was my mantra.
And I had some counselling. It did help! I was able to tell my therapist in gory detail of the darkest and scariest moments: eg. when our son had his seizures and we didn’t know if they were caused by a bleeding until we had CT. My therapist could take any “horror story” without feeling too sorry - other than my friends. It felt good to let it all out without having to overstrain a friend.
Being a caregiver is difficult. Being a caregiver of a young adult is difficult on additoinal levels. My son and I went through many fights during his sickness - in a time when fighting about freedom and responsability was the last thing I had energy for.
Sorry Nick, this post turned out too long. I wish you well. I wish you the same that I wished for your daughter: courage and patience. Be kind to yourself.
Not for me, it didn’t. I think it’s a fabulous post, like a superb jewel in the front of a crown.
Thank you.
Richard
Happy New Year Nick. I’m so sorry that such a scary thing has happened to your daughter and your family. I just want to share that I experience sensory disruptions and am one year out from an AVM rupture which caused stroke, a visual field cut, and a lasting seizure disorder. Much like some people shared in this thread, I’ve learned some tactics to deal with these disruptions. Making sure I’m not in loud, crowded places (although I suppose that’s a silver lining of COVID-19, not doing too much of that!). I experienced much of that “flood” you referenced your daughter experiencing for the first 6 months or so in many of the same ways your daughter has. Lights, sounds, stimulation in general was just sometimes way too much. Something that I learned in OT which was really really helpful was to just work in chunks of time. For example, 30 min of light activity, 10 min of rest and so on. Taking it really small and just slowly working up to a bit more activity. Also, definitely want to echo the nonlinear aspect of recovery. Even while many of my sensory issues are “resolved,” there are just times every so often where I can’t handle anything and have to just completely disengage and rest. Your daughter is so brave as are you and your family and don’t forget to leave space to just acknowledge how truly hard and crappy this whole thing is! Take good care and best of luck on the long recovery road.
Sitta
Absolutely not to long. It is just so great to hear (and i do not mean this in any derogatory way)other stories. It gives me support and makes me feel “not alone” in this continuous ordeal. A tunnel with a very faint light at the end of it.
But I continue to have hope, sometime less than others, but reading these posts and the GREAT support from all really and truly gives me energy and “relief”.
We as a Family remain focused and especially my wife who has basically given up everything to be the main pillar in this road of recovery with our daughter. Dealing with the daily ups and downs, training, dealing with local authorities for support etc. etc. Without her, i personally would have been drowned and lost.
Thank you
The one thought I’ve got to help you and your family here is a simple one but important. When you’re on an aircraft, they tell you that if the air pressure drops, you should fit your own mask before attending to others.
This is important to keep this in mind in these circumstances, too: that you can’t afford to dedicate so much of yourselves to your daughter that you omit yourselves completely. We all know as parents that that’s what we do but this is already a long journey and it’s going to stay long, so my request is just that you don’t forget your own needs but you do your support in as sustainable way as possible. I don’t know where the right balance lies, I just want to nudge you that you are both critical to the success of her recovery so it’s critical you look after yourselves.
Lots of love,
Richard